Helping patients prepare their dependent children for parental death: mixed-methods evaluation of a codeveloped training programme for palliative and allied healthcare professionals in the UK.

OBJECTIVES: To evaluate how the codesigned training programme, 'No conversation too tough', can help cancer, palliative and wider healthcare professionals support patients to communicate with their dependent children when a parent is dying. We examined perceptions of learning provided by the training, its contribution to confidence in communicating with families when a parent is dying, and subjective experience of, and reactions to, the training. We also explored potential changes in practice behaviours. DESIGN: Pre-post, convergent, parallel, mixed-methods study. Motivations for practice change were measured quantitatively, and qualitatively through semi-structured interviews. Non-parametric analysis was conducted for self-efficacy and outcome expectancy measures; descriptive statistics examined perceptions of usefulness; intentions to use learning in practice and reactions to the training. Semi-structured interviews examined motivations and perceptions of learning in depth. A 6-week, practice log recorded immediate practice effects and reflections. SETTING: 1-day training delivered 3 times, total delegates 36: online December 2021, February 2022, face-to-face March 2022. Questionnaires delivered correspondingly in online or paper formats, semi-structured interviews online. PARTICIPANTS: Pre-post: palliative care professionals (n=14/12), acute cancer clinical nurse specialists (n=16/11), other healthcare professionals (n=5/5). RESULTS: Positive changes were observed in self-efficacy (17 of 19 dimensions p<0.003) and outcome expectancies (3 of 14 beliefs p<0.036). Perceptions of usefulness and intentions to use learning in practice mean scores were 82-94 (scales 0=low to 100=high). There was high affirmation for sharing learning and influencing change in the workplace and wider practice. Content, style and delivery were positively endorsed. Further elements to be included in the training were identified. CONCLUSIONS: The training programme has the potential to effect change in practice behaviours. A large-scale study will evaluate the roll-out of the training delivered to individual professionals and whole teams across the UK. It will provide longer-term feedback to understand practice behaviour and mediators of change across professional roles.

Benefits, challenges, and strategies related to using presumptive recommendations for HPV vaccination: A qualitative study with rural and non-rural-serving primary care professionals.

HPV vaccination coverage remains far below the national target of 80% among US adolescents, particularly in rural areas, which have vaccine uptake rates that are 10% points lower than non-rural areas on average. Primary care professionals (PCPs) can increase coverage by using presumptive recommendations to introduce HPV vaccination in a way that assumes parents want to vaccinate. Through semi-structured interviews, we explored PCPs' experiences and perceptions of using presumptive recommendations in rural- and non-rural-serving primary care clinics in North Carolina. Thematic analysis revealed that most PCPs in rural and non-rural contexts used presumptive recommendations and felt the strategy was an effective and concise way to introduce the topic of HPV vaccination to parents. At the same time, some PCPs raised concerns about presumptive recommendations potentially straining relationships with certain parents, including those who had previously declined HPV vaccine or who distrust medical authority due to their past experiences with the healthcare system. PCPs dealt with these challenges by using a more open-ended approach when introducing HPV vaccination to parents. In conclusion, our findings suggest that PCPs in both rural and non-rural settings see value in using presumptive recommendations to introduce HPV vaccination, but to adequately address concerns and ensure increased HPV vaccine uptake, PCPs can use simple and culturally sensitive language to ensure fully informed consent and to maintain parental trust. And to further strengthen HPV vaccine discussions, PCPs can utilize other effective HPV communication techniques, like the Announcement Approach, in discussing HPV vaccinations with hesitant parents.

The role of the psychological attributes of parents and children, and fracture history in upper extremity fractures in school-age and adolescents: A case-control study.

OBJECTIVES: This study aims to investigate the influence of parents and children's psychological attributes and previous fracture history on upper extremity fractures in school-aged and adolescent children. PATIENTS AND METHODS: Between January 2022 and January 2023, a total of 194 participants consisting of 97 cases with upper extremity fractures (23 males, 74 females; median age: 10 years; range, 6 to 16 years) and 97 age-matched controls suffering from growing pains (47 males, 50 females; median age: 10 years; range, 6 to 16 years) were included in this case-control study. Both cases and controls were of school-age or over. The parents of the children were interviewed face-to-face using psychological scales including the Adult Attention Deficit Hyperactivity Disorder Self-Report Scale (ASRS), the Autism-Spectrum Quotient (AQ), the Short Form of the Conners' Parent Rating Scale-Revised (CPRS-R:S), and the Developmental Coordination Disorder Questionnaire 2007 (DCDQ'07). The results derived from these scales and the demographics of the participants were evaluated in terms of their association with the risk of upper extremity fractures. RESULTS: A household income below the official minimum monthly wage (MMW) and a previous fracture history showed a higher risk for upper extremity fractures (odds ratio [OR]=2.38, 95% confidence interval [CI]: 1.07-5.26 and OR=24.93, 95% CI: 3.27-189.98, respectively). In the univariate analyses, elevated scores on the hyperactivity subscale of CPRS-R:S (CPRS-R:SHS) were associated with a higher fracture risk (OR=1.14, 95% CI: 1.05-1.24). Furthermore, both a household income below MMW, a previous fracture history, and higher CPRS-R:S-HS scores were found as independent risk factors for upper extremity fractures in the multivariate regression analysis (OR=2.78, 95% CI: 1.13-6.86, OR=21.79, 95% CI: 2.73-174.03), and OR=1.11, 95% CI: 1.02-1.22, respectively). CONCLUSION: Our study results highlight the importance of known risk factors for upper extremity fractures such as lower monthly wage and the presence of previous fractures. The psychological states of parents and children should be evaluated together.

A lifestyle screening tool for young children in the community: needs and wishes of parents and youth healthcare professionals.

BACKGROUND: Youth healthcare has an important role in promoting a healthy lifestyle in young children in order to prevent lifestyle-related health problems. To aid youth healthcare in this task, a new lifestyle screening tool will be developed. The aim of this study was to explore how youth healthcare professionals (YHCP) could best support parents in improving their children's lifestyle using a new lifestyle screening tool for young children. METHODS: We conducted four and seven focus groups among parents (N = 25) and YHCP (N = 25), respectively. Two main topics were addressed: the experiences with current practice of youth healthcare regarding lifestyle in young children, and the requirements for the lifestyle screening tool to be developed. The focus groups were recorded, transcribed verbatim and analysed using an inductive approach. RESULTS: Both parents and YHCP indicated that young children's lifestyles are often discussed during youth healthcare appointments. While parents felt that this discussion could be more in-depth, YHCP mainly needed clues to continue the discussion. According to parents and YHCP, a new lifestyle screening tool for young children should be easy to use, take little time and provide courses of action. Moreover, it should be attractive to complete and align with the family concerned. CONCLUSIONS: According to parents and YHCP, a new lifestyle screening tool for young children could be useful to discuss specific lifestyle topics in more detail and to provide targeted advice.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

PURPOSE: For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. METHODS: Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. RESULTS: A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. CONCLUSION: Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Parental perceptions of body weight and appetite in infants and toddlers with cystic fibrosis.

Nutritional status has clinical relevance and is a target of guidance to parents of children with cystic fibrosis (CF). Growth is routinely monitored in CF clinics but there is no standardized way of assessing appetitive behaviors or parents' perceptions of their children's appetite. Greater understanding of these factors could improve clinical guidance regarding parent feeding behaviors. We therefore aimed to assess parent perceptions of child weight, and parent reports of child appetite using the Baby Eating Behavior Questionnaire (BEBQ), in a sample of infants and toddlers with CF, compared with a community sample. We additionally assessed relationships of parent perceptions of child weight with parent feeding behaviors in the sample with CF. Anthropometric and questionnaire data were collected for 32 infants and toddlers with CF, as well as 193 infants and toddlers drawn from RESONANCE, a community cohort study. Parents perceived children with CF to be lower in weight than their actual weight, to a greater extent than was evident in the community sample. Parents who perceived their children with CF to be underweight vs. right weight reported greater slowness in eating on the BEBQ. Parents perceived children with CF to have greater slowness in eating and lower enjoyment of food, compared to parents of children in the community sample, independent of sample differences in child weight, age, and sex. Our results demonstrate the potential utility of the BEBQ in a clinical sample and suggest it may be helpful for clinicians to assess parents' perceptions of their child's weight and appetite to promote a fuller understanding of the child's nutritional status, facilitate appropriate feeding behaviors and alleviate unnecessary concerns.

Examining parents' experiences and challenges of feeding preschool children with avid eating behaviour.

Avid eating behaviours, including greater responsiveness to food cues and emotional over-eating, have been linked to child overweight and obesity. Parental feeding practices are modifiable components of a child's food environment and may be key levers for behaviour change in tailored interventions to support parents of children with avid eating behaviour. However, there is a lack of research examining parents' experiences in this context. This study aimed to explore parents' experiences of feeding children with avid eating behaviour and to understand any challenges experienced in this context. Semi-structured interviews with parents (N = 15) of a preschool child (3-5 years) identified as having an avid eating behaviour profile explored how children's avid eating manifests, the parental feeding practices used to manage avid eating, and the perceived effectiveness of these strategies. Data were analysed using reflexive thematic analysis. Four core themes were generated. Theme one, 'Have they got worms? Children's insatiable hunger', captures parents' interpretation of the complex ways in which avid eating behaviour manifests. Theme two, 'Parenthood as a duty', illustrates how parents' perceived responsibilities shape their feeding practices. Theme three, 'Lifelong habits', captures parents' use of responsive feeding practices to support children's healthy relationship with food. Theme four, 'Picking battles', captures the structure- and coercive-based feeding strategies commonly used to manage children's avid eating. This novel study provides an in-depth understanding of the complex ways that children's avid eating behaviour manifests, and the strategic and creative parental feeding practices used to manage these behaviours. Such findings are valuable for informing the development of future support resources for parents/caregivers to help their children with avid eating behaviours to develop a healthy relationship with food.

Development of a patient decision aid for children and adolescents following anterior cruciate ligament rupture: an international mixed-methods study.

AIM: To develop and user test an evidence-based patient decision aid for children and adolescents who are considering anterior cruciate ligament (ACL) reconstruction. DESIGN: Mixed-methods study describing the development of a patient decision aid. SETTING: A draft decision aid was developed by a multidisciplinary steering group (including various types of health professionals and researchers, and consumers) informed by the best available evidence and existing patient decision aids. PARTICIPANTS: People who ruptured their ACL when they were under 18 years old (ie, adolescents), their parents, and health professionals who manage these patients. Participants were recruited through social media and the network outreach of the steering group. PRIMARY AND SECONDARY OUTCOMES: Semistructured interviews and questionnaires were used to gather feedback on the decision aid. The feedback was used to refine the decision aid and assess acceptability. An iterative cycle of interviews, refining the aid according to feedback and further interviews, was used. Interviews were analysed using reflexive thematic analysis. RESULTS: We conducted 32 interviews; 16 health professionals (12 physiotherapists, 4 orthopaedic surgeons) and 16 people who ruptured their ACL when they were under 18 years old (7 were adolescents and 9 were adults at the time of the interview). Parents participated in 8 interviews. Most health professionals, patients and parents rated the aid's acceptability as good-to-excellent. Health professionals and patients agreed on most aspects of the decision aid, but some health professionals had differing views on non-surgical management, risk of harms, treatment protocols and evidence on benefits and harms. CONCLUSION: Our patient decision aid is an acceptable tool to help children and adolescents choose an appropriate management option following ACL rupture with their parents and health professionals. A clinical trial evaluating the potential benefit of this tool for children and adolescents considering ACL reconstruction is warranted.

Caring for a child with cancer during COVID-19 pandemic: an assessment of the parents' perception and stress level.

Background: The emergence of COVID-19 pandemic has led to heightened fear and uncertainty among parents of children with cancer. This study was conducted to evaluate the parental perceptions toward effects of COVID-19 infection to children with cancer, determine their stress level and factors contributing to high stress level during the pandemic. Methods: This cross-sectional study was conducted in three paediatric oncology centres in Malaysia from September 2020 until December 2022. A total of 167 parents were recruited. Parents completed a set of questionnaires to assess their perception on effect of COVID-19 infection to children with cancer and COVID Stress Scale (CSS) to assess the parents' stress level. Results: Patients' mean age at study entry was 8.75 years (SD 4.38). Ninety-one (54.5%) patients were still on active treatment. More than 80% of the parents obtained information regarding COVID-19 infection from mass media and social networking. Fear of their children contracting COVID-19 infection was high especially among patients who were still on treatment. Forty-nine (29.3%) parents were significantly affected by the pandemic leading to loss of job or monthly income. Twenty-nine (17.4%) patients required treatment modification during the pandemic. The median total score for CSS was 78.0 (IQR 25th 64.0; 75th 95.0). Ninety-one (54.5%) respondents were very/extremely stressed based on the CSS scores. Components with high scores were xenophobia (median score 18.0; IQR 25th 13.0, 75th 22.0), fear of danger (median score 17.0; IQR 25th 14.0, 75th 20.0) and contamination fears (median score 16.0; IQR 25th 12.0, 75th 19.0). Lower household income was associated with higher stress level (p = 0.006). Conclusion: Our study demonstrated high awareness regarding risk of COVID-19 infection among parents of oncology children. Half of the parents had high stress level, with low household income identified as a factor associated with high stress level.

The Effect of Happiness Educational Program of Fordyce on the Sense of Coherence and Psychological Well-being of Adolescents with a Parent with Cancer: A Randomized Clinical Trial.

Background: Having a parent with cancer is one of the risk factors for adolescents, which makes them face many psychological problems. Therefore, this study aimed to determine the effect of Happiness Educational Program of Fordyce on the sense of coherence and psychological well-being of adolescents who have a parent with cancer. Methods: In this randomized clinical trial study, 92 adolescents whose diagnosed parents have referred to the oncology ward of Shahid Rajaei Hospital in Yasuj, from June to September 2021, were selected through the convenience sampling method; however, they were randomly assigned to one of the two groups of the intervention or control. The number of sessions in the intervention group was 6, each consisting of 60 minutes and performed one day a week for 6 weeks. In addition to the demographic information form, the Antonovsky's Sense of Coherence Questionnaire-13 and the Ryff's scale of Psychological Well-being-18 were used before and immediately after the intervention. Data were analyzed through SPSS software, version 21, using statistical tests of Chi-square, t-test, Fisher's exact, Mann-Whitney, and Wilcoxon. Results: After the intervention, statistically significant differences were observed in the median scores of the sense of coherence (P<0.001) and psychological well-being (P<0.001) between the two groups of intervention and control. Conclusion: Although the Happiness Educational Program of Fordyce could improve the sense of coherence and psychological well-being of adolescents who have a parent with cancer, more investigations are recommended to be conducted.Trial Registration Number: IRCT20210331050795N1.

Willingness and hesitancy towards the governmental free human papillomavirus vaccination among parents of eligible adolescent girls in Shenzhen, Southern China.

BACKGROUND: Since 2020, China has actively promoted HPV vaccination for eligible adolescent girls through various pilot programmes. This study investigated parental willingness and hesitancy towards the government-sponsored, free human papillomavirus (HPV) vaccination for eligible adolescent girls in Shenzhen, Southern China. METHODS: From June to August 2022, a cross-sectional survey was conducted with parents of girls entering Grade 7, employing an adapted Vaccine Hesitancy Scale to assess vaccine hesitancy and logistic regression to identify factors influencing willingness to accept the free domestic vaccines. RESULTS: Although only 3.4% of the 2856 respondents had their daughters vaccinated against HPV prior to the survey, 91.7% were willing to utilise the governmental vaccination services. Parents with children in public schools (χ2 = 20.08, p < 0.001), those with more secure medical insurance (χ2 = 4.97, p = 0.026), and parents who had received an HPV vaccine themselves (χ2 = 28.829, p < 0.001) showed more reluctance towards the free vaccines. Vaccine hesitancy was presented in a mere 2.1% but was a significant predictor of vaccine refusal, even after adjusting for multiple factors (adjusted OR = 15.98, 95% CI: 9.06, 28.20). Notably, about four-fifths of parents of unvaccinated daughters harboured concerns about the safety and efficacy of the domestic vaccine. CONCLUSIONS: Although parents show a strong inclination to utilise the government vaccination services, their vaccine hesitancy, driven by safety concerns and a preference for imported vaccines, remains a significant barrier for rolling out vaccination coverage. This study highlights the need for multifaceted intervention strategies that address these issues to enhance HPV vaccine uptake effectively.

[Puff bars and adolescence: issues and intervention strategies]. / Puffs à l'adolescence : enjeux et stratégies d'intervention.

The popularity of electronic cigarettes among young people in Switzerland has been increasing since the introduction of puffs to the market. According to recent epidemiological data, more than half of 14-25 year olds have tried these devices, potentially exposing themselves to nicotine and substances with little-known long-term effects. This phenomenon raises concerns regarding health risks and the developmental phase during which these consumptions occur. Primary care physicians have a crucial role to play in managing these consumptions through an integrated approach. Involvement of parents is recommended, taking into account confidentiality issues. Strict legislative measures are essential on a public health level to counter this growing trend.

La popularité des cigarettes électroniques parmi les jeunes en Suisse est en progression depuis l'arrivée des puffs sur le marché. Selon les données épidémiologiques récentes, plus de la moitié des 14-25 ans ont testé ces dispositifs qui les exposent potentiellement à la nicotine et à des substances aux effets à long terme peu connus. Ce phénomène soulève des préoccupations au vu du risque d'atteinte à la santé et de la phase de développement dans laquelle s'inscrivent ces consommations. Les médecins traitants ont un rôle crucial à jouer dans la prise en charge de ces consommations au travers d'une approche intégrée. L'implication des parents est recommandée, en tenant compte des aspects liés à la confidentialité. Sur le plan de la santé publique, des mesures législatives strictes sont primordiales pour contrer ce phénomène croissant.

Impact of Colorectal Nurse Specialist supervised parental administration of rectal washouts on Hirschsprung's disease outcomes: a retrospective review.

PURPOSE: To highlight the utility of Colorectal Nurse Specialist (CNS) supervised parental administration of rectal washouts in the management of Hirschsprung's disease (HD). METHODS: Retrospective case note review of HD patients treated at a tertiary children's hospital in United Kingdom from January 2011 to December 2022. Data collected included demographics, complications, enterocolitis, obstructive symptoms and stomas. Primary pull-through (PT) is done 8-12 weeks after birth. Parental expertise in performing rectal washouts at home is ensured by our CNS team before and after PT. RESULTS: PT was completed in 69 of 74 HD patients. Rectal washouts were attempted on 63 patients before PT. Failure of rectal washout efficacy necessitated a stoma in four patients (6.4%). Of the 65 patients who had PT and stoma closed, three (4.5%) required a further stoma over a mean follow-up period of 57 months (Range 7-144 months). Two of these had intractable diarrhoea due to Total Colonic Aganglionosis (TCA). One patient (1.5%) had unmanageable obstructive symptoms requiring re-diversion. Hirschsprung-associated enterocolitis (HAEC) requiring hospital admission occurred in 14 patients (21%). CONCLUSION: Our stoma rates are lower compared to recent UK data. This could potentially be due to emphasis on parental ability to perform effective rectal washouts at home under CNS supervision.

Parental Education for the Prevention of Plagiocephaly.

INTRODUCTION: The American Academy of Pediatrics Back-to-Sleep Campaign significantly reduced infant mortality from sudden infant death syndrome. As a result of prolonged supine positioning, the incidence of deformational plagiocephaly has also risen 5-fold since its adoption. We aimed to improve the current educational paradigm for new parents with the goal of reducing the incidence of plagiocephaly within the confines of the Back-to-Sleep Campaign. We hypothesized that the early addition of plagiocephaly focused education for parents would reduce cephalic index, the ratio of head width to length, used as an easily measured objective proxy for positional plagiocephaly. METHODS: Children were screened at their newborn visit. Premature newborns and those diagnosed with craniofacial disorders were excluded. For those enrolled, biparietal and anteroposterior measurements of the head were obtained using manual calipers to obtain cephalic index. Subjects randomly assigned to the intervention group were shown a 2-minute video and given an educational pamphlet on methods to prevent plagiocephaly. Unpaired 2-sample t tests comparing mean differences in intervention and control were performed. RESULTS: Thirty-nine subjects were enrolled as of November 2023 with variable lengths of follow-up completed. The average baseline cephalic index for subjects in the control group was 82.7 and 83.8 for intervention group. Unpaired 2-sample t tests were performed at 2-, 4-, and 6-month time points to analyze the difference between groups. At 4 months, average cephalic index for subjects in the control and treatment group, respectively, was 90.6 and 83.4 (P = 0.02). SIGNIFICANCE: Parental education at the newborn visit led to decreases in cephalic index, a proxy for positional plagiocephaly, compared with control patients. This simple intervention has the potential to reduce parental stress and healthcare costs associated with the evaluation and treatment of plagiocephaly.

Mental Health Care Utilization Among Parents of Children With Cancer.

Importance: Caring for children diagnosed with cancer may adversely affect the mental health (MH) of parents. Objective: To characterize utilization of MH services among parents of children with vs without cancer using nationwide commercial claims data. Design, Setting, and Participants: For this cross-sectional study, the Merative MarketScan Commercial Claims Database was used to identify continuously insured families of children treated for cancer (aged ≤21 years at diagnosis) during 2010 to 2018, compared with families who matched eligibility criteria but did not have a child with a cancer history. Parents were assessed from 18 months before to 12 months after their child's cancer diagnosis. Analyses were conducted from February 2022 to September 2023. Exposures: Children's cancer diagnosis. Main Outcomes and Measures: Outcomes included parents' MH-related visits during the first year following their child's cancer diagnosis. Logistic regressions compared outcomes between families of children with vs without cancer, adjusting for sociodemographic and clinical factors. Results: This study included 4837 families of children with cancer (4210 mothers and 4016 fathers) and 24 185 families of children without cancer (21 444 mothers and 19 591 fathers) with continuous insurance enrollment. Most household leads were aged 35 to 54 years (3700 [76.5%] in families of children with cancer vs 17 812 [73.6%] in families of children without cancer) and resided in urban areas (4252 [87.9%] vs 21 156 [87.5%]). The probabilities of parents having anxiety-related visits (10.6% vs 7.0%), depression-related visits (8.4% vs 6.1%), and any MH-related visits (18.1% vs 13.3%) were higher in families of children with vs without cancer. Adjusted analyses showed absolute increases of 3.2 percentage points (95% CI, 2.3 to 4.0; 45.7% relative increase), 2.2 percentage points (95% CI, 1.4 to 3.0; 36.1% relative increase), and 4.2 percentage points (95% CI, 3.1 to 5.3; 31.3% relative increase) in the probabilities of 1 or both parents having anxiety-related visits, depression-related visits, and any MH-related visits, respectively, among families of children with vs without cancer. Such differences were greater in magnitude among mothers than fathers. Conclusions and Relevance: In this cohort study of privately insured parents, those caring for children with cancer had a higher likelihood of utilizing MH care than other parents. These findings underline the importance of interventions toward targeted counseling and support to better meet MH care needs among parents and caregivers of children with cancer.

Parental use and acceptance of an accessible, commercially available intraoral camera for teledentistry in their children.

PURPOSE: The potential of combining teledentistry and engaging parents as underutilised resources to monitor paediatric dental health was emphasised during the COVID-19 pandemic and remains underexplored. This study aims to assess parental acceptance and use of a commercially available intraoral camera (IOC) for effective remote monitoring. METHODS: 47 child-parent dyads, where the parent was the main caregiver and the child was treated under general anaesthesia for early childhood caries, were recruited. Caregivers were trained to image their child's teeth on a commercially available IOC. Subsequently, submitted images were reviewed asynchronously by dentists for image quality, presence of dislodged fillings, abscesses, cavitation, and oral hygiene. Post-surgery monitoring was performed using teledentistry at 1 and 2 months and in-person at 4 months. A modified Telehealth Usability Questionnaire (TUQ) was used to record caregiver acceptance for study procedures. RESULTS: A mean TUQ of 6.09 out of 7 was scored by caregivers. Caregiver-reported issues were limited to problems with technique and child uncooperativeness. The number of clear images during the second teledentistry review was improved compared to the first (p = 0.007). 68% of children liked having images of their teeth taken. CONCLUSION: This study supports the feasibility of using an IOC as a clinically appropriate avenue for teledentistry with a high level of caregiver-child acceptance.

Understanding perspectives on neural tube defect management: insights from Jordanian parents.

INTRODUCTION: Neural tube defects (NTDs) represent a spectrum of heterogeneous birth anomalies characterized by the incomplete closure of the neural tube. In Jordan, NTDs are estimated to occur in approximately one out of every 1000 live births. Timely identification of NTDs during the 18-22 weeks of gestation period offers parents various management options, including intrauterine NTD repair and termination of pregnancy (TOP). This study aims to assess and compare parental knowledge and perceptions of these management modalities between parents of affected children and those with healthy offspring. MATERIALS AND METHODS: This retrospective case-control study was conducted at Jordan University Hospital (JUH) using telephone-administered questionnaires. Categorical variables were summarized using counts and percentages, while continuous variables were analyzed using mean and standard deviation. The association between exposure variables and outcomes was explored using binary logistic regression. Data analysis was performed using SPSS for Windows version 26 (SPSS Inc., Chicago, IL). RESULTS: The study sample comprised 143 participants, with 49.7% being parents of children with NTDs. The majority of NTD cases were associated with unplanned pregnancies, lack of folic acid supplementation, and postnatal diagnosis. Concerning parental knowledge of TOP in Jordan, 86% believed it to be legally permissible in certain situations. However, there was no statistically significant difference between cases and controls regarding attitudes toward TOP. While the majority of parents with NTD-affected children (88.7%) expressed a willingness to consider intrauterine surgery, this percentage decreased significantly (to 77.6%) after receiving detailed information about the procedure's risks and benefits (p = .013). CONCLUSIONS: This study represents the first case-control investigational study in Jordan focusing on parental perspectives regarding TOP versus intrauterine repair of myelomeningocele following a diagnosis of an NTD-affected fetus. Based on our findings, we urge the implementation of a national and international surveillance program for NTDs, assessing the disease burden, facilitating resource allocation toward prevention strategies, and promoting early diagnosis initiatives either by using newly suggested diagnostic biomarkers or early Antenatal ultrasonography.

It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study.

BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim of this study was to explore parents' QoL when their child has a life-threatening or life-limiting condition. METHODS: The study has a qualitative, hermeneutic phenomenological design inspired by van Manen's phenomenology of practice. In-depth interviews were conducted with 12 fathers and 12 mothers of children living with cancer or a genetic condition. A deeper understanding of parents' lived experiences was obtained through an adapted photo elicitation method. Two rounds of thematic analysis were conducted, covering both the photo elicitation data, and interview data. RESULTS: The findings describe four themes related to parents' QoL: living a normal life, giving my child a good life, having time to fulfill siblings' needs, and feeling heard and respected in the health and social care system. CONCLUSIONS: The complexity of elements shaping parents' QoL is evident. The interconnectedness between parents, the ill child, siblings, and interactions with the health and social care system, highlights the need to understand and address diverse aspects in enhancing parents QoL.

[Palliative care in paediatric oncology - a national parental perspective]. / Palliativ vård av barn med cancer.

The WHO definition of paediatric palliative care (PPC) emphasises the role of active multidimensional care, carried out with interdisciplinary competence, and providing support to the entire family. The aim of the current national study was to investigate whether parents perceived that their child received palliative care (PC) before the child died of cancer and the parent's view of the care during the child's last month of life. In 2016, parents (n=226) completed a study-specific survey, and a majority reported that their child had received PC with good professional competence. However, many parents reported that the child was greatly affected by pain in the last month of life. Geographical differences indicated that parents who live in sparsely populated areas to a lesser extent reported that their child received PC. Lastly, our conclusion is that access to equal PPC and improved symptom control is crucial for children and their families.

Children's preoperative stress according to the parental presence evaluated by salivary cortisol and mYPAS: quasi-randomized trial.

OBJECTIVE: The main objective of this study was to compare stress and anxiety levels in children undergoing surgical procedures with or without parental presence at induction of anesthesia by measuring salivary cortisol levels and applying the mYPAS. METHOD: Quasi-randomized trial with children aged 5-12 year, with ASA physical status I, II, or III, undergoing elective surgery. According to parents' willingness, the pair were defined as accompanied or unaccompanied group. Chi-square, Fisher's exact tests, Student's t test, Mann-Whitney, Hodges-Lehman and Spearman's tests were used for statistical analyzes. RESULTS: We included 46 children; 63% were preschool children mostly accompanied by their mothers (80%). The median mYPAS score was 37.5 (quartile range, 23.4-51.6) in unaccompanied children, and 55.0 (quartile range, 27.9-65.0) in accompanied children, with an estimated median difference of +11.8 (95% CI of 0 to 23.4; p = 0.044). There were no significant differences in the mean salivary cortisol levels. CONCLUSION: The level of anxiety was higher in accompanied children. There were no differences in salivary cortisol levels between both groups. Brazilian Registry of Clinical Trials (ReBEC): RBR-9wj4qvy.