Parents and carers of children with congenital anomalies can experience stress when managing their child's healthcare needs. It is important that they are well supported. This study explored the support needs of parents/carers of children with a congenital anomaly across Europe.
We developed a cross-sectional online survey to measure parents' experiences of support at diagnosis and in subsequent years. We recruited parents/carers of children (0–10 years) with cleft lip, congenital heart defect requiring surgery, Down syndrome and/or spina bifida, online via relevant organisations in 10 European countries (March–July 2021).
A total of 1109 parents/carers were recruited in Poland (n = 476), the United Kingdom (n = 120), Germany (n = 97), Belgium/Netherlands (n = 74), Croatia (n = 68), Italy (n = 59), other European countries (n = 92) and unspecified/non-European countries (n = 84). At diagnosis, only 27% (262/984) of parents/carers reported feeling well supported by HCPs, and 49% (468/959) reported that they would have liked professional psychological support but did not receive it. After diagnosis, satisfaction with support from HCPs differed significantly across countries, whereas satisfaction with support from participants' personal networks was more consistent.
Our findings suggest that parents require greater support from HCPs at diagnosis, particularly psychological support. Further research in a European context is needed to understand what the barriers to support might be and how it may be integrated more effectively into existing healthcare systems.
Hospital readmissions are costly for both patients and hospitals and can be affected by social needs. Little is known about whether social needs differ between paediatric patients who require readmission within 30 days and those who do not.
Using the results of a social needs screening tool, this retrospective, observational study aimed to compare (1) the average number of social needs per patient and (2) the proportion of patients with specific social needs between paediatric patients readmitted to the hospital and a matched number of randomly selected non-readmitted paediatric patients. The screening tool was administered electronically and completed within 180 days of the studied encounter.
Of 240 patients studied, 120 had been readmitted within 30 days, and 120 had not. There were no significant differences in demographic parameters between the two groups. Nearly 27% of all patients had one or more needs identified, although there were no significant differences between readmitted and non-readmitted patients in the proportion with social needs in general or with any specific need. Food (14.2%) and childcare (13.8%) needs were identified most frequently. While the average number of needs was higher for readmitted than for non-readmitted patients, the difference was not statistically significant (0.65 vs. 0.38; p = 0.066).
In this study, readmission status was not linked to a higher proportion of any individual social need or average number of needs; however, more than 25% of all patients had one or more needs. This suggests the importance of screening during all admissions, as hospitalization provides an opportunity to address needs for those who may not have consistent access to health care.
Parent-mediated early interventions (PMEIs) benefit children with autism spectrum disorder (ASD) by improving social communication skills and enhancing parent–child interactions. However, the characteristics of a comprehensive intervention have not yet been established, and further research is necessary to identify its essential components. Therefore, the current study aimed to identify the pivotal factors of parent-mediated early intervention for children with ASD.
This qualitative study employs thematic analysis method to analyse the data collected from semistructured interviews. The participants included 14 parents and eight educators of children aged 2–7 with ASD, who were interviewed in focus groups.
Overall, four themes were identified that need to be included in parent-based programmes to improve the communication skills of children with ASD. These themes include child-related factors, parents-related factors, environment-related factors and the use of appropriate communication strategies. These results underscore the importance of adopting a multifaceted approach to early interventions for children with ASD.
Effective PMEIs strategies must be tailored to the unique characteristics of the child, the temperament of the parents and the specific characteristics of their living environment. By considering these multiple dimensions, interventions can be optimized to support the developmental needs of children with ASD.
Children with cochlear implants are at increased risk of vestibular dysfunction and balance impairments, yet the reliability of commonly used static and dynamic balance assessments has not been thoroughly evaluated in this population. This study aimed to assess the reliability of static balance tests (single-leg stance test [SLST] and tandem Romberg test [RT], performed with eyes open [EO] and eyes closed [EC]), dynamic balance tests (timed up and go test [TUG] and figure-of-eight walk test [F8WT]) and Paediatric Balance Scale (PBS), which includes both static and dynamic components, and to examine relationships among these tests in children with cochlear implants.
Sixty-two children with cochlear implants, aged 7–13 years, performed all the balance tests. Two test sessions were conducted by the same physiotherapist on separate days within the same week.
All balance tests demonstrated excellent intrarater reliability, with ICCs ranging from 0.906 to 0.985. The PBS showed excellent internal consistency (Cronbach's alpha = 0.88). Strong correlations were observed among static balance tests, and moderate correlations were found among dynamic tests. Correlations between static and dynamic tests were weaker. The PBS correlated strongly with static tests and moderately with dynamic tests.
All tests demonstrated excellent intrarater reliability, with PBS also showing excellent internal consistency. While these findings confirm the reliability of the assessments, validity was not examined and should be addressed in future research to establish their clinical utility in this population.
The rapidly increasing use of smartphones/other devices has raised significant concern for parents, clinicians and teachers, especially during and after the global pandemic situation. The study hypothesized that children between the ages of 18 and 60 months might have delayed communication development compared to those in the same age group who did not have any delays because of excessive screen time and the types of content they usually view on their smartphones/other electronic devices.
507 (Group A) children with communication delays and 388 (Group B) children without delays, both boys and girls, aged 18 to 60 months, were included in this observational and cross-sectional study. The developmental milestone of social communication was evaluated using the Bayley scale. Smartphone/other electronic device viewing variables among participants were interviewed. The odds ratio established whether screen time and content typically viewed influence delayed social communication development or not.
In Group A, 71% of children used smartphones or other electronic devices. Group A and Group B had significantly different scores on the Bayley scale, with a p-value of < 0.005. With a p-value of < 0.005, the content that children accessed on their smartphones and other electronic devices was statistically significantly linked to delayed communication.
Our research stated that screen time and content that is typically viewed may be a contributing factor; it is not the sole cause of communication delays because other aspects of a child's environment, including the number of caregivers, the length of time spent with parent–child interaction, the scope of social interaction and the scope of outdoor activities, play a significant role in frequent activities on smartphones/other electronic devices.
Children of parents who have higher health literacy (HL) have better outcomes. Most studies on parents' generic HL focus on the capability to manage their own health, rather than the capability to manage their child's health.
Parents of children 0–5 years at the paediatric outpatient department at a university hospital participated in this cross-sectional study by answering a self-administered questionnaire. We used (1) Generic Health Literacy (GHL) Scale for Thais, (2) parent's management and awareness of their child's health-PMATCH, an instrument, which was developed to explore HL, which pertains to the capability to manage their child's health and (3) parents' health promotive practices on age-appropriate childcare recommendations. Cronbach's alpha was used to analyse the internal consistency of HL scales (HL = 0.97 and PMATCH = 0.94) and confirmatory factor analysis was used to analyse the PMATCH scale. Logistic regressions were used to identify associations between HL, PMATCH and parents' practices including dentist visits, exclusive breastfeeding, sleeping on the back, self-feeding and screen time.
Of the 144 parents, 82.8% were female; most parents had fair HL (low 4.9%, fair 56.9% and high 38.2%) and high PMATCH. Confirmatory factor analysis standardized loadings and inter-factor correlations for the PMATCH instrument were highly significant. Parents' HL was found to mediate PMATCH on specific outcomes. Although total HL was not significantly associated with parent outcome behaviours, PMATCH-Practice was significantly positively associated with bringing the child to the dentist regularly (AOR 1.74) and negatively associated with the child sleeping on the back (AOR 0.52). We did not find a significant association between total HL, PMATCH and breast feeding, self-feeding or screentime.
There is a complex interplay between parental health promotive practices, HL and PMATCH. Future studies should invest in further understanding the relationship between HL and PMATCH, and the causes of non-adherence to formulate better-targeted preventive interventions.
Clinicians can help address the discrimination that children and youth with disabilities often encounter. However, they commonly report lacking training and experience in addressing multiple forms of discrimination, such as ableism and racism. A lack of knowledge could lead to stigma and inequities within healthcare. This study explores clinicians' suggestions for addressing multiple forms of discrimination among children and youth with disabilities.
This qualitative study involved in-depth interviews with a purposive sample of 15 paediatric rehabilitation clinicians and community service providers working with disabled youth who have multiple minoritized identities. We applied an inductive thematic analysis to the interview transcripts.
Our findings highlighted the following four themes: (1) disability awareness and anti-ableism training and education; (2) enhancing inclusive programming, services and policies; (3) building connections to supports and resources; and (4) advocacy and incorporating lived experience perspectives.
The results underscore the need for clinicians to engage in more training and to facilitate access to resources for multiply minoritized youth with disabilities. Dedicated funding, resources and commitment at organizational, systems and policy levels are needed to address discrimination.
Time alone between adolescents with chronic illnesses and their clinicians may contribute to patient-centred care and transition readiness within this population. Shifts in the adolescent–parent–clinician relationship underpin this contribution; as such, this qualitative study explored adolescent, parent and clinician perspectives on time alone in routine visits for paediatric chronic illness.
Semi-structured interviews with English-speaking adolescents (ages 12–17, n = 65) and their parents (n = 63) were conducted after follow-up visits for inflammatory bowel disease (IBD), juvenile idiopathic arthritis (JIA), sickle cell disease (SCD) or type 1 diabetes (TID) at specialty clinics affiliated with the Children's Hospital of Philadelphia. Clinicians (n = 16) at the same clinics were also interviewed for this cross-sectional qualitative study. Interviews were transcribed, and thematic analysis was performed using an inductive approach.
Qualitative analysis yielded six themes: (1) Clinician, parent and adolescent factors influence provision of time alone; (2) some adolescents communicate more openly with their clinician during time alone; (3) some adolescents do not share new information during time alone; (4) time alone facilitates the development of the clinician-adolescent relationship and helps prepare the adolescent for the transition to adult care; (5) clinicians continuously re-negotiate the parent–adolescent–clinician relationship to meet adolescents' needs; and (6) time alone can raise challenges for clinicians.
Time alone can affect information sharing and relationship building between adolescents with chronic illnesses and their clinicians. By fostering open communication and trust in the adolescent–clinician relationship, time alone may help prepare adolescents with chronic illnesses for the transition to adult care.
In the Chinese context, a greater emphasis is placed on academic skills rather than healthy lifestyles among pre-school children. To promote well-being as a whole, a comprehensive interpretation of multivariant relationships between health, functioning and well-being is necessary for children in this age group.
The current study adopted a network analysis among 422 urban Chinese pre-school children (57.8 ± 9.7 months, 54.2% boys) to detect the inter-relationships between the variables from nine domains, including demographics, adiposity, physical activity levels, executive function, motor coordination, sleep disturbance, diet health and mental strengths and difficulties. Data was obtained through both questionnaires completed by parents and direct assessment among children.
Findings indicated that poor well-being outcomes were prevalent among the participating children, including risk of central obesity (18.9%), global sleep disturbance (38.4%) and moderate-to-severe mental difficulties (42.6%). The network analysis demonstrated that age fully/partially mediated the associations among child functioning such as executive function and motor coordination. Mental strength, mental difficulties and sleep health had mutual correlations, however, none of them had a significant relationship with age. Furthermore, sex played little role in the network.
This study supports that healthy lifestyle is crucial for Chinese pre-school children to learn and practice. Results of network analysis implies that education on child's mental health are warranted for children, parents and teachers. A balance between academic achievement and child's health well-being should be prioritized in child care and early childhood education.
京公网安备 11010802042870号
京ICP备2023020795号-1
扫码关注我们
求助内容：
应助结果提醒方式：