Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 129
Filtrar
1.
Int J Paediatr Dent ; 2024 Jun 09.
Artigo em Inglês | MEDLINE | ID: mdl-38853387

RESUMO

BACKGROUND: Parental perceptions of staining due to silver diamine fluoride (SDF) could affect its utilization in paediatric dentistry. This study represents the second part of a wider project focused on SDF esthetic acceptability among Italian parents. AIM: To evaluate parental acceptance of SDF staining in Italy and to assess whether the parent's level of acceptance depends on location, child's behavior, or demographic background. DESIGN: A cross-sectional study was conducted among Italian parents of children attending two university dental clinics. We used a validated Italian version of the questionnaire "Parental Perceptions of Silver Diamine Fluoride Dental Color Changes." RESULTS: Two hundred and thirty-four parents took part in the survey. Of parents, 65.4% considered the staining on posterior teeth esthetically "acceptable" or "somewhat acceptable," and 19.3% on anterior teeth (p = .001). In a scenario of positive cooperation, 48.5% of parents were "somewhat likely" or "very likely" to choose SDF to treat posterior teeth, and 17.6% on anterior teeth (p = .001). Level of acceptance increased as the difficulty the child would experience to receive conventional treatment increased. CONCLUSION: Staining on posterior teeth is more acceptable to parents than staining on anterior teeth. Level of acceptance on anterior teeth increases when sedation or general anesthesia is the alternative for the child.

2.
Cleft Palate Craniofac J ; : 10556656241259885, 2024 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-38831630

RESUMO

I've Just Seen a Face is a new resource produced by author Amy Mendillo and is designed for parents of children with cleft lip and/or palate to help them to navigate the first year of life. In this invited article, Kenny Ardouin provides an overview of the book, and offers perspective on the content contained within, including potential issues for professionals working with cleft to consider. The review ends with recommendations for likely beneficiaries of the book, as well as considerations for additional future versions of the book.

3.
Cleft Palate Craniofac J ; : 10556656241257101, 2024 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-38778755

RESUMO

OBJECTIVE: This study aimed to (1) assess layperson preferences for how surgical information is presented; (2) evaluate how the format of visual information relates to layperson comfort with undergoing surgery, perceptions of surgeon character traits, and beliefs about artistic skill impacting plastic surgery practice; and (3) identify sociodemographic characteristics associated with these outcomes. DESIGN: A survey was developed in which one of five standardized sets of information depicting a unilateral cleft lip repair was presented as (1) text alone, (2) quick sketches, (3) simple drawings, (4) detailed illustrations, or (5) photographs. SETTING: Online crowdsourcing platform. PARTICIPANTS: Raters aged 18 years and older from the United States. INTERVENTIONS: None. MAIN OUTCOME MEASURE(S): After viewing the surgical information, participants answered three sets of Likert scale questions. Ratings were averaged to produce three composite scores assessing (1) comfort with undergoing surgery (2) perceptions of surgeon character traits, and (3) beliefs about plastic surgery and artistry. RESULTS: Four hundred seventy-nine participants were included. Surgeon character traits score was highest among participants who viewed detailed illustrations at 4.46 ± 0.59, followed by photographs at 4.43 ± 0.54, text alone at 4.28 ± 0.59, simple drawings at 4.17 ± 0.67, and quick sketches at 4.17 ± 0.71 (p = 0.0014). Participants who viewed detailed illustrations rated surgical comfort score and plastic surgery and artistry score highest, although differences did not achieve statistical significance. CONCLUSIONS: Viewing detailed cleft lip repair illustrations was significantly associated with positive perceptions of surgeon character traits. Our data help to contextualize methods of communication and education valued by the public when seeking cleft care.

4.
Front Public Health ; 12: 1332095, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38633232

RESUMO

Introduction: Adolescent suicide is a prevalent issue globally, with various factors contributing to this phenomenon. This study aimed to investigate these factors and their interrelationships to better understand the causes of adolescent suicide and provide evidence for its prevention. Methods: This study conducted among middle school students in Liaoning Province, China, from April to May 2016, A cross-sectional survey was administered to 1,028 students aged 10-19, using instruments such as the Behavior Questionnaire-Revised (SBQ-R), Children's Perception of Interparental Conflict Scale (CPIC), and revised version of Inventory of Parent Attachment (IPPA-R). Result: Binary logistic regression analysis revealed that adolescents aged 15-19, adolescents with strong perceptions of parental conflict were at high risk of suicide intention. Adolescents living in rural areas, adolescents with high mother-child attachment, adolescents with high father-child attachment were at low risk of suicide intention. Furthermore, parent-child attachment played a mediating role between two dimensions of parental conflict perception (resolved situations and response effect) and suicide intention. Discussion: The study concludes that adolescents living in urban areas, older adolescents, adolescents with a high level of parental conflict intensity, and those with low levels of parent-child attachment are at high risk of suicide intention. parent-child attachment played a mediating role between two dimensions of parental conflict perception (resolved situations and response effect) and suicide intention. Interventions aimed at reducing family conflicts and improving parent-child relationships are recommended to decrease the incidence of adolescent suicide.


Assuntos
Pais , Suicídio , Adolescente , Humanos , Estudos Transversais , Relações Pais-Filho , China/epidemiologia , Estudantes
5.
Childs Nerv Syst ; 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38587626

RESUMO

PURPOSE: Telemetric monitoring of intracranial pressure (ICP) facilitates long-term measurements and home monitoring, thus potentially reducing diagnostic imaging and acute hospital admissions in favour of outpatient appointments. Especially in paediatric patients, telemetric ICP monitoring requires a high level of collaboration and compliance from patients and parents. In this study, we aim to systematically investigate (1) patient and parent perception of telemetric ICP system utility and (2) hospital contact history and thus the potential cost-benefit of telemetric ICP monitoring in paediatric patients with a cerebrospinal fluid disorder. METHODS: We conducted a nationwide questionnaire study, including paediatric patients with either a current or previous telemetric ICP sensor and their parents. Additionally, a retrospective review of electronic health records for all included children was performed. RESULTS: We included 16 children (age range 3-16 years), with a total of 41 telemetric ICP sensors implanted. Following sensor implantation, the frequency of telephone contacts and outpatient visits increased. No corresponding decrease in hospital admissions or total length of stay was found. The telemetric ICP sensor provided most parents with an improved sense of security and was seen as a necessary and valuable tool in treatment guidance. The size and shape of the sensor itself were reported as disadvantages, while the external monitoring equipment was reported as easy to use but too large and heavy for a child to carry. CONCLUSION: Though, in quantitative terms, there was no cost-benefit of the telemetric ICP sensor, it contributed to extended parental involvement and a sense of improved safety.

6.
Cleft Palate Craniofac J ; : 10556656241245284, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38584503

RESUMO

OBJECTIVE: Children with craniofacial microsomia (CFM) have complex healthcare needs, resulting in evaluations and interventions from infancy onward. Yet, little is understood about families' treatment experiences or the impact of CFM on caregivers' well-being. To address this gap, the NIH-funded 'Craniofacial microsomia: Accelerating Research and Education (CARE)' program sought to develop a conceptual thematic framework of caregiver adjustment to CFM. DESIGN: Caregivers reported on their child's medical and surgical history. Narrative interviews were conducted with US caregivers (n = 62) of children aged 3-17 years with CFM. Transcripts were inductively coded and final themes and subthemes were identified. RESULTS: Components of the framework included: 1) Diagnostic Experiences, including pregnancy and birth, initial emotional responses, communication about the diagnosis by healthcare providers, and information-seeking behaviors; 2) Child Health and Healthcare Experiences, including feeding, the child's physical health, burden of care, medical decision-making, surgical experiences, and the perceived quality of care; 3) Child Development, including cognition and behavior, educational provision, social experiences, and emotional well-being; and 4) Family Functioning, including parental well-being, relationships, coping strategies, and personal growth. Participants also identified a series of "high" and "low" points throughout their journey and shared their priorities for future research. CONCLUSIONS: Narrative interviews provided rich insight into caregivers' experiences of having a child with CFM and enabled the development of a conceptual thematic framework to guide clinical care and future research. Information gathered from this study demonstrates the need to incorporate evidence-based psychological support for families into the CFM pathway from birth onward.

7.
Cleft Palate Craniofac J ; : 10556656241234587, 2024 Feb 19.
Artigo em Inglês | MEDLINE | ID: mdl-38373442

RESUMO

The objective was to evaluate the readability of easily accessible parent-directed information concerning Robin Sequence (RS) online, compared to the American Medical Association (AMA)-recommended sixth grade (age 11-12) readability level.A Google search of the term "Pierre Robin Sequence information" was performed. The first ten websites were evaluated using six commonly used readability formulas. Sample texts from three websites were 'translated' by the authors, with the aim of achieving a sixth grade readability level.The following outcomes were used: Automated Readability Index (ARI), Coleman Liau Index (CLI), Gunning Fog Score, Simple Measure of Gobbledygook (SMOG), Flesch Kincaid Grade Level (FKGL), and Flesch Reading Ease (FRE) score.The mean pooled grade level of the top 10 included websites was 12.1 (age 17-18). The overall FRE Index was 45.8, which is equivalent to a College-grade reading level. The mean grade level by each test used was: Flesch-Kincaid Grade Level 11.6 (age 16-17), Gunning Fog Score 13.3 (age 18+), SMOG 10.0 (age 14-15), Coleman-Liau Index 13.8 (age 18+), and ARI 12.0 (age 17-18). The author-translated resources achieved pooled mean grade levels of 6.3-6.5.Parent-directed online materials concerning RS have a readability in excess of the AMA-recommended sixth grade reading level. Even though the condition is complex, more readable resources are achievable. Coproduction of parent-directed resources in association with public an patient involvement (PPI) contributors is encouraged.

8.
Cleft Palate Craniofac J ; : 10556656241233115, 2024 Feb 23.
Artigo em Inglês | MEDLINE | ID: mdl-38389436

RESUMO

OBJECTIVE: Information regarding how caregivers cope when using presurgical infant orthopedic (PSIO) appliances is sparse. This study aimed to understand caregivers' perspectives and experiences with contemporary PSIO treatment. DESIGN: PSIO videos shared on the YouTube™ platform were used as the data source. Videos with caregivers were identified (n = 21) and portions with caregiver narratives were transcribed. This was followed by the application of a six-step thematic analysis as conceptualized by Braun and Clarke (2006, 2019). RESULTS: Two themes were identified from the caregiver narratives in the PSIO videos. The Family Journey theme included reaction to diagnosis, choice of center, burden of care, care commitment, coping, and testimonials. The Information theme included PSIO techniques and PSIO benefits. CONCLUSION: Multifaceted challenges and coping strategies were described by caregivers during the PSIO phase. Caregivers remained committed to treatment despite the burden of care, were motivated by an understanding of the benefits of PSIO, and customized care based on their individual strengths and needs. Study results can help providers gain an understanding of what caregivers experience outside the clinical environment.

9.
Cleft Palate Craniofac J ; : 10556656241236011, 2024 Feb 27.
Artigo em Inglês | MEDLINE | ID: mdl-38414354

RESUMO

OBJECTIVE: This study was aimed at describing the level of stress and types of coping strategies used among Malay parents of children with cleft lip and/or palate (CL/P). DESIGN: Cross-sectional study. SETTING: A dental clinic and a general hospital. PARTICIPANTS: Parents (N = 84) whose children were less than 12 years old with CL/P. METHODS: Socio-demographic data and clinical characteristics of CL/P were collected. Self-administered validated Malay versions of the stress scale from the Depressive, Anxiety and Stress Scale-42 (DASS-42) and COPE Inventory questionnaires were used. Descriptive statistics and Multivariate Analysis of Covariance were used for data analysis. RESULTS: The prevalence of stress among parents of children with CL/P was 21.4% [95% confidence interval (12.4, 30.4)]. The most common coping strategies were problem-focused (mean 58.15, standard deviation (SD) 7.75), followed by emotion-focused (mean 54.05, SD 4.78). The adjusted mean score for overall coping strategies was significantly different between stressed and non-stressed parents after adjustment for education, number of children, sex of child with CL/P, and cleft type [F (df) = 4.174 (3,74), P = .009]. There was a significant mean difference between stressed and non-stressed parents for avoidant coping strategies [P = .003]. Problem-focused and emotion-focused coping strategies did not differ after Bonferroni correction. CONCLUSIONS: Around a fifth of parents caring for children with CL/P experienced stress and avoidant coping strategies were more common among stressed parents. Multi-disciplinary team care should provide social support to parents of children with CL/P.

10.
Cleft Palate Craniofac J ; : 10556656231225304, 2024 Jan 09.
Artigo em Inglês | MEDLINE | ID: mdl-38196373

RESUMO

OBJECTIVES: (1) Assess caregiver-reported development in infants born with cleft lip ± alveolus (CL ± A) and cleft lip and palate (CLP); (2) determine factors associated with increased developmental risk; and (3) determine consistency of developmental risk before and after surgery for cleft lip. DESIGN: Prospective, longitudinal assessment of development. Time (T) 1, prior to lip closure; T2, 2 months post lip closure. SETTING: Three US craniofacial teams and online parent support groups. PARTICIPANTS: 123 total caregivers (96% mothers); 100 at T1, 92 at T2, and 69 at both T1 and T2. MEASURE: Ages and Stages Questionnaire-3 (ASQ-3): Communication, Gross Motor, Fine Motor, Problem Solving, Personal Social Domains. RESULTS: At T1 47%; at T2 42% passed all 5 Domains; 36% of infants pass all 5 Domains at both T1 and T2. Infants with CLP were at greatest risk on Communication [B = 1.449 (CI = .149-20.079), p = .038; Odds Ratio (OR) = 4.3 (CI = .923-19.650)] and Gross Motor Domains [B = 1.753 (CI = .316-20.605), p = .034; OR = 5.8 (CI = 1.162-28.671)]. Male infants were at greatest risk on Fine Motor [B = 1.542 (CI = .495-20.005), p = .009; OR = 4.7 (CI = 1.278-17.101)] and Problem Solving Domains [B = 1.200 (CI = .118-19.708), p = .044; OR = 3.3 (CI = .896-12.285)]. CONCLUSIONS: Based on caregiver report, infants with CL ± A and CLP meet referral criteria at a high rate. Infants with CLP and male infants were at greatest risk. Regular developmental screening is recommended.

11.
Soins ; 69(882): 41-47, 2024.
Artigo em Francês | MEDLINE | ID: mdl-38296420

RESUMO

Restraint during care in pediatrics is a professional practice that is beginning to be studied. However, few studies explore this phenomenon from the point of view of the parents of children who are firmly restrained during care. Guided by the caregiver's perspective, care remains a priority for them. Some perceive the violence of the situation, while others focus on the benevolence of the professionals. In all cases, this practice implies the need for professionals to support the parents and children concerned, in order to safeguard the best interests of the young patient.


Assuntos
Serviços Médicos de Emergência , Pais , Criança , Humanos , Restrição Física
12.
Matern Child Nutr ; 20 Suppl 2: e13514, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37010142

RESUMO

Childhood overweight and obesity are rapidly increasing in urban Vietnam. Dietary patterns are understudied for their association with obesity risk in these children, and it is unclear which parental and societal factors should be targeted in prevention efforts. The study assessed child characteristics, dietary patterns, parental and societal factors for associations with childhood overweight and obesity status in Ho Chi Minh City, Vietnam. A sample of 221 children aged 9-11 years was randomly selected from four Ho Chi Minh City primary schools. Weight, height and waist circumference were measured using standardized methods. Three 24-h dietary recalls were collected from 124 children, which were used to assess dietary patterns using principal component analysis (PCA). Parents completed a questionnaire about child, parental and societal factors. The overall prevalence of obesity was 31.7% and of combined overweight and obesity 59.3%. Three main dietary patterns from 10 food groups were identified by PCA: traditional (grains, vegetables, meat and meat alternatives), discretionary (snacks and sweetened beverages), and industrialized (fast food and processed meat). Children with higher discretionary diet scores had higher odds of being overweight. Being a boy, screen time over 2 h/day, parental underestimation of child weight status, father's obesity, and household income in the lowest quintile were positively associated with childhood obesity. Future intervention programmes in Vietnam need to consider targeting children's unhealthy diets and parental perceptions of child weight status, as well as focusing on upstream approaches that reduce inequities contributing to childhood obesity and concomitant dietary patterns.


Assuntos
Sobrepeso , Obesidade Infantil , Masculino , Criança , Humanos , Sobrepeso/epidemiologia , Obesidade Infantil/epidemiologia , Vietnã/epidemiologia , Padrões Dietéticos , Índice de Massa Corporal , Dieta , Pais
13.
Cleft Palate Craniofac J ; 61(1): 5-11, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-35861787

RESUMO

OBJECTIVE: To assess the content and quality of YouTubeTM videos concerning nasoalveolar molding (NAM). DESIGN: YouTubeTM was searched for videos containing information relevant to NAM with the 2 keywords "nasoalveolar molding," and "presurgical infant orthopedics." A total of 24 out of 51 videos were found to be applicable to this study and rated for quality using the Global Quality Scale (GQS). To determine whether the contents of the selected 24 videos were useful or not, a content usefulness index consisting of 8 parameters was created. The videos were classified according to the usefulness index as low or high content videos. Spearman rank correlation analysis, Kolmogorov-Smirnov, Shapiro-Wilk, and Mann-Whitney U-tests were used for statistical analysis. RESULTS: The mean GQS score of the 24 YouTubeTM videos on NAM was 2.3 ± 0.8, indicating overall poor quality. In terms of information, videos with high content (29.2%) were less in number than low content videos (70.8%). GQS values were found to be significantly higher in the high content group (P < .01). Regarding the source, video, and audio quality values were significantly higher in the expert group compared to the caregiver group (P < .01), whereas the usefulness index did not differ between groups (P > .05). A significant relationship was found between GQS and usefulness index, audio quality, and video quality (P < .001). CONCLUSIONS: YouTube™ videos on NAM were generally inadequate in their content information and poor in quality. Expert videos, showing better audiovisual quality and flow compared to non-expert videos, did not offer higher quality information about NAM considering the usefulness index.


Assuntos
Mídias Sociais , Humanos , Gravação em Vídeo , Moldagem Nasoalveolar , Reprodutibilidade dos Testes
14.
Cleft Palate Craniofac J ; 61(1): 110-118, 2024 01.
Artigo em Inglês | MEDLINE | ID: mdl-35918807

RESUMO

This study examined the posttraumatic growth (PTG) about parents of children with cleft lip and/or palate (CL/P) and the correlates of PTG.A cross-sectional study.Parents (N = 388) of children with isolated CL/P (ages 3 months-18 years) who had at least one cleft surgery within an oral and maxillofacial surgery department of a university-affiliated tertiary hospital in a provincial capital in southwest China.Demographic information questionnaire, The Posttraumatic Growth Inventory, Simplified Coping Style Questionnaire, and Social Support Rating Scale were used for data collection.Parents' mean PTG score was in the moderate range (M = 65.7, SD = 13.73). PTG differed regarding the participants' sex, ethnicity, and educational background. Pearson's correlation analysis revealed that positive coping (r = 0.43, P < .01), negative coping (r = 0.13, P < .01), and social support (r = 0.26, P < .01) were positively correlated with PTG. Multiple regression model showed that 20.6% (P < .001) of the variance in PTG was explained by higher positive coping (ß = 0.35, P < .001), greater social support (ß = 0.13, P = .01), and for cleft lip compared to cleft palate (ß = -0.14, P ≤ .01), with no variance difference for cleft lip and palate.Parents of children with CL/P had moderate PTG. Potentially modifiable correlates of PTG suggest interventions to enhance parental positive coping and social support may increase PTG. Further studies are needed to confirm the PTG level and its affecting factors of parents of children with CL/P.


Assuntos
Fenda Labial , Fissura Palatina , Crescimento Psicológico Pós-Traumático , Criança , Humanos , Fenda Labial/cirurgia , Fissura Palatina/cirurgia , Estudos Transversais , Adaptação Psicológica , Pais , Inquéritos e Questionários
15.
Cleft Palate Craniofac J ; : 10556656231219579, 2023 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-38092729

RESUMO

OBJECTIVE: To investigate how a patient information leaflet describing what to expect during a craniofacial multidisciplinary team (MDT) appointment is experienced by parents of children with craniofacial anomalies (CFAs) and whether it helps with preparation for the appointment. DESIGN: Combination of qualitative and quantitative design. SETTING: Norwegian National Unit for Craniofacial Surgery. PARTICIPANTS: Thirty-three parents of children with CFAs completed the questionnaire and fourteen were subsequently interviewed. INTERVENTIONS: A patient information leaflet, sent to all parents before their MDT appointment. MAIN OUTCOME MEASURES: Descriptive questionnaire data and interview data. RESULTS: All parents (N = 33, 100%) found the leaflet easy to understand, while 31 (93.9%) found it provided helpful information. However, many first-time attendees still found the MDT setting overwhelming. CONCLUSIONS: A leaflet may be helpful for parents when preparing for their child's MDT appointment. However, some parents may need additional support and information related to their child's treatment pathway.

16.
J Pediatr Urol ; 19(6): 783.e1-783.e5, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37704527

RESUMO

INTRODUCTION/OBJECTIVES: Contrast enhanced voiding ultrasonography (ceVUS) has not been widely reported to be used during video urodynamics (UDS). We previously reported on the feasibility of this. In this study, we aimed to understand how parents perceived their child's experience of undergoing ceVUS during UDS compared to fluoroscopic (fluoro) UDS. METHODS: Children who underwent both fluoro UDS and ceVUS UDS were recruited. Parents were asked to complete a questionnaire to evaluate their experience with both studies. Demographics including gender, age at study, and diagnosis were collected to account for differences in perception. Statistical analysis was performed. RESULTS: 53 patients were included: 31 girls, 22 boys. Diagnoses included myelomeningocele (67.9%), low/tethered cord (13.2%), closed spinal dysraphism (9.4%), posterior urethral valve (1.9%), cloacal anomaly (1.9%), caudal regression (1.9%), myeloschisis (1.9%), and cerebral palsy (1.9%). There was no statistical difference in mean age at fluoro UDS and ceVUS UDS (77.3 months vs 99.7 months respectively, p = 0.09). All 53 parents (100%) were satisfied/very satisfied with their ceVUS experience; 48 parents (90.6%) preferred ceVUS, 3 parents (5.7%) preferred fluoro UDS, and 2 (3.8%) were neutral. On average, parents perceived ceVUS to be more comfortable (72.7%) and produce better results (67.4%) than fluoro UDS. The majority felt that both studies allowed the same contact with their child (52.3%) and took the same amount of time (50.0%). However 29.5% felt ceVUS was faster and 34.1% felt ceVUS allowed more contact with their child (Fig. 1). 26 parents (49.1%) specifically noted no radiation as the reason why they preferred ceVUS over fluoro. The average age at ceVUS UDS was younger in those who preferred ceVUS UDS compared to those who preferred fluoro UDS (94.6 months vs 180.0 months, p = 0.03). The average age at fluoro UDS was younger in those who preferred ceVUS UDS vs fluoro UDS (73.1 months vs 144 months, p = 0.03). Gender's influence on preference approached significance (p = 0.07); all 3 parents who preferred fluoro UDS had male children. CONCLUSIONS: The majority of parents preferred ceVUS over fluoro UDS. ceVUS was perceived to be more comfortable and provide better results. Many parents highlighted no radiation and no fluoroscopic machinery as factors in preference of ceVUS over fluoro. The parents who preferred ceVUS UDS had children who had both studies done at an earlier age compared to the parents who preferred fluoro UDS.


Assuntos
Defeitos do Tubo Neural , Urodinâmica , Criança , Feminino , Humanos , Masculino , Fluoroscopia , Micção , Ultrassonografia/métodos , Percepção
17.
Cleft Palate Craniofac J ; : 10556656231190043, 2023 Jul 24.
Artigo em Inglês | MEDLINE | ID: mdl-37488963

RESUMO

OBJECTIVE: Apply thematic analysis of online discussion boards to characterize families' experiences and concerns regarding craniosynostosis diagnoses to aid physicians in tailoring care to families. DESIGN: Grounded theory-based qualitative analysis. SETTING: Discussion boards related to craniosynostosis identified via Google and Yahoo. PATIENTS/PARTICIPANTS: Posts about craniosynostosis between 2017-2022. INTERVENTIONS: Thematic analysis was performed using three rounds of coding. Post features including author type and use of technical language were examined. MAIN OUTCOME MEASURE: Overarching themes emerging from analysis of posts, with forums analyzed until sufficient thematic repetition was observed. RESULTS: 366 posts from 4 websites by 290 unique users were included. Parents of patients with craniosynostosis wrote 59% of posts while patients wrote 4%. Five selective codes were identified: 1) Building Community, 2) Diagnosis/Evaluation, 3) Treatment, 4) Outcomes, and 5) Emotional Concerns. Building Community was the most assigned code (85% of posts). 71% of parents' posts expressing emotional concerns expressed negative emotions, commonly regarding anxiety about diagnosis (71%), frustration about doctors' responses (21%), or negative reactions to online search results (17%). 88% of patients' posts expressed positive emotions, discussing positive long-term outcomes. Concerns that may guide physicians included anxiety about delayed diagnosis, difficulty distinguishing postpartum head shape changes from craniosynostosis, and difficulty finding a care team. CONCLUSIONS: Online discussion boards allow families of patients with craniosynostosis to share experiences and find community. Improving communication between surgeons, pediatricians, and families about timing of evaluation and revising online information about this condition may ameliorate some anxiety associated with this diagnosis.

18.
J Voice ; 2023 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-37380583

RESUMO

PURPOSE: This study aimed to investigate Chinese parents' perceptions of pediatric voice disorders to determine their level of health literacy and knowledge gaps to understand the determinants of initiating voice therapy for children with dysphonia. METHOD: A cross-sectional survey was conducted in three voice clinics in Chengdu, China, from October 1, 2021, to October 1, 2022. Impairment of children's quality of life as perceived by parents was assessed using the pediatric Voice-Related Quality-of-Life (pVRQOL) scale. RESULTS: Overall, 206 parents whose children were recommended voice therapy were recruited (Mean ± SD age, 35.0 ± 4.62 years; male/female = 1:3). When otolaryngologists recommended that their children with dysphonia initiate voice therapy, most participants had positive responses (n = 176, 85.4%). The mean pVRQOL score was 40.8 in the accept group and 37.6 in the reject group (difference, 1.7; 95% CI, -4.98 1.69). Participants who had a more influential work status, had an only-child, had children with shorter-term voice symptoms, and visited specialized hospitals were more likely to have negative practices related to children's voice therapy (P < 0.05). CONCLUSIONS: This study represents an important first step in understanding Chinese parents' perceptions of and motivations for initiating voice therapy for their children with dysphonia. Initiation of treatment as recommended in pediatric populations depends on multiple factors, such as the duration of voice symptoms, family structure, and hospital type. It is imperative to promote public health care education on voice therapy among parents, as health care literacy is the primary driving factors in decision-making.

19.
Cleft Palate Craniofac J ; : 10556656231180512, 2023 Jun 06.
Artigo em Inglês | MEDLINE | ID: mdl-37282504

RESUMO

OBJECTIVE: The birth of a child with a craniofacial anomaly (CFA) can have a profound psychological impact on the family and the parental relationship. The purpose of this study was to qualitatively investigate how a child's CFA condition affected parents' couple relationship. SETTING: All patients with a CFA are followed-up by the National Unit for Craniofacial Surgery, a specialized and multidisciplinary team. Hence, participants were recruited within a centralized treatment setting. DESIGN: We used a qualitative approach to explore the relationship experiences of parents of children with CFAs. The interviews were analysed using a hermeneutic-phenomenological approach. PARTICIPANTS: The study included 13 parents, nine mothers and four fathers of children with a range of different CFAs. At the time of the interview, 10 participants were married, one was cohabiting, and two were divorced. RESULTS: Most participants perceived their partners as committed and engaged in caring for their affected child and involved in the family's everyday life, and described a strengthened relationship to their partner after the child with a CFA was born. However, some participants struggled in their relationships with their partners, and did not receive the comfort and support they needed during this critical time, leading to feelings of distance and loneliness. CONCLUSIONS: Craniofacial teams should be mindful of the importance of the environment surrounding the child, such as parental relationship and family function. Therefore, a comprehensive approach should be included in team-based care, and couples and families in need of extra support should be referred to relevant specialists.

20.
Pediatr Surg Int ; 39(1): 210, 2023 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-37261599

RESUMO

BACKGROUND: Parents endure significant stress when their newborns require surgery while in the neonatal intensive care unit (NICU). Our study aims to explore the surgical NICU experience from the parents' perspective and identify areas that may improve this experience. A secondary objective was to integrate their feedback to refine the implementation strategy of the neonatal enhanced recovery after surgery (ERAS®) guideline. METHODS: In December 2019, five surgical NICU parents participated in a focus group. Conversation surrounded parents' perspectives and experiences of the surgical NICU. Inductive analysis was performed to identify data, themes, and concepts that emerged from the discussion. RESULTS: Participants identified four major interrelated themes that impacted the surgical parents' NICU experience. These themes include (1) parental state, both physical and emotional, (2) the altered parental caregiver role which necessitates identifying alternative meaningful parental experiences, (3) the care team dynamic, incorporating consistency and effective communication, and (4) the discharge process which may be significantly eased through graduated, hands-on training. CONCLUSION: Key elements of the neonatal ERAS® guideline address major themes and stressors identified by parents. The parental perspective may help clinicians appreciate the parent surgical NICU experience and assist in improving family-centered care to surgical infants and their families.


Assuntos
Unidades de Terapia Intensiva Neonatal , Alta do Paciente , Lactente , Recém-Nascido , Humanos , Pais/psicologia , Emoções
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...