Parental Perceptions and Knowledge towards Asthma Action Plans.

INTRODUCTION: Personalised Asthma Action Plans (AAPs) are a cornerstone of paediatric asthma management. We aimed to assess parental knowledge and perceptions of the use of AAPs in managing their child's asthma. METHODS: In 2023 we conducted a cross-sectional survey to assess knowledge and perceptions of AAPs in parents/caregivers of children aged 0-17 years with asthma who had an AAP and attended respiratory clinics at Sydney Children's Hospital, Randwick. The questionnaire included parental perceptions on the utility of AAPs, parental asthma management self-efficacy (PAMSE), and an adapted version of the Asthma Action Plan Knowledge Interview tool (AAPKI). Descriptive statistics and regression analyses were used to assess associations between AAPKI, PAMSE and other outcomes. RESULTS: Seventy-one parents completed the survey. Mean PAMSE score was 4.2/5 (SD 0.5). Median AAPKI score was 70.2% out of 100% (IQR 20.4%). Most parents (80.0%, n = 56) were satisfied/very satisfied with using AAPs to manage their child's asthma. Most agreed/strongly agreed that AAPs were helpful in knowing when to seek medical attention for their child's asthma (81.7%, n = 58), helped their understanding of asthma severity (81.7%, n = 58), and increased their confidence in asthma management (76.0%, n = 54). Over half of parents (55.7%, n = 39) would prefer AAPs digitally and majority (78.6%, n = 55) would like colour-coded AAPs. CONCLUSION: High levels of AAP knowledge and self-efficacy scores were demonstrated. Most parents expressed understanding of the benefits of AAPs. Our findings suggest parents of children with asthma prefer AAPs in colour and in digital version which may help guide standardisation of AAPs across Australia.

Telemetric ICP monitoring in children: a national questionnaire-based study.

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.

Continuous Support from the Same Public Health Nurse and Parental Perception and Use of Health Care Services: A Retrospective Observational Study.

OBJECTIVE: Continuity is considered essential for high-quality maternal and child health care services, but studies to show this effect on parental well-being are still rare. We studied whether receiving support from the same public health nurse has a beneficial effect on parental perceptions of health care professionals and the use of childcare support services. METHODS: Maternal and child health care services were provided by different nurses in a Japanese municipality until March 2019. From April 2019, all families with infants received continuous support from the same assigned nurse. A questionnaire covering parental perception and the use of services was sent by postal mail to 1,341 families with infants. The data were analyzed using χ2-test, t-test and logistic regression producing odds ratios (OR) with 95% confidence intervals (CI). RESULTS: Parental perceptions of the availability of professionals to discuss children's issues, the degree of understanding about available other childcare support services, the degree of utilizing other services, and satisfaction with health care services were higher in parents who received continuous support from the same assigned nurse compared to those who did not receive continuous support. Continuous support was associated with parental perceptions of the availability of professionals to discuss children's issues (OR = 1.97, 95% CI 1.34-2.91) and the degree of understanding about available other child-care support services (OR = 1.65, 95% CI 1.11-2.44) after adjusting the results for socioeconomic factors. CONCLUSIONS: Continuous support from the same assigned nurse has benefits for parents. This offers a cost-effective way to improve parental well-being.

Does YouTubeTM Offer High-Quality Information About Nasoalveolar Molding?

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.

Developmental Risk for Infants with Cleft Lip with or Without Cleft Palate Based on Caregiver-Proxy Reports.

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.

Posttraumatic Growth and its Correlates Among Parents of Children With Cleft Lip and/or Palate.

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.

Invited Review: "I've Just Seen a Face".

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.

Crowdsourcing the Impact of Illustration in Cleft Surgery Education.

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.

Presurgical Infant Orthopedic Videos on YouTube™: A Thematic Analysis of Caregiver Narratives.

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.

Stress and Coping Strategies in Malay Parents of Children with Cleft Lip and/or Palate.

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.