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The aim of the present study was to examine parental experiences of homeschooling during the COVID-19 pandemic in families with or without a child with a mental health condition across Europe. The study included 6720 parents recruited through schools, patient organizations and social media platforms (2002 parents with a child with a mental health condition and 4718 without) from seven European countries: the UK ( n  = 508), Sweden ( n  = 1436), Spain ( n  = 1491), Belgium ( n  = 508), the Netherlands ( n  = 324), Germany ( n  = 1662) and Italy ( n  = 794). Many parents reported negative effects of homeschooling for themselves and their child, and many found homeschooling to be of poor quality, with insufficient support from schools. In most countries, contact with teachers was limited, leaving parents with primary responsibility for managing homeschooling. Parents also reported increased levels of stress, worry, social isolation, and domestic conflict. A small number of parents reported increased parental alcohol/drug use. Some differences were found between countries and some negative experiences were more common in families with a child with a mental health condition. However, differences between countries and between families with and without a mental health condition were generally small, indicating that many parents across countries reported negative experiences. Some parents also reported positive experiences of homeschooling. The adverse effects of homeschooling will likely have a long-term impact and contribute to increased inequalities. Given that school closures may be less effective than other interventions, policymakers need to carefully consider the negative consequences of homeschooling during additional waves of the COVID-19 pandemic and future pandemics.

BackgroundParents 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.MethodsIn 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.ResultsParticipants 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.ConclusionKey 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.

Background An infant’s admission to a neonatal intensive-care unit (NICU) inevitably causes the parents emotional stress. Communication between parents and NICU staff is an essential part of the support offered to the parents and can reduce their emotional stress. The aim of this study was to describe parents’ experiences of communication with NICU staff. Methods A hermeneutic lifeworld interview study was performed with 18 families whose children were treated in the level III NICU at a university hospital in Sweden. The interviews were analysed to gain an interpretation of the phenomenon of how parents in the NICU experienced their communication with the staff, in order to find new ways to understand their experience. Results Parents’ experience of communication with the staff during their infant’s stay at the NICU can be described by the main theme ‘being given attention or ignored in their emotional situation’. The main theme derives from three themes; (1) meeting a fellow human being , (2) being included or excluded as a parent and (3) bearing unwanted responsibility . Conclusions This study shows that parents experienced communication with the NICU staff as essential to their management of their situation. Attentive communication gives the parents relief in their trying circumstances. In contrast, lack of communication contributes to feelings of loneliness, abandonment and unwanted responsibility, which adds to the burden of an already difficult situation. The level of communication in meetings with staff can have a decisive influence on parents’ experiences of the NICU. The staff should thus be reminded of their unique position to help parents handle their emotional difficulties. The organization should facilitate opportunities for good communication between parents and staff through training, staffing and the physical health care environment.

Gastrostomy feeding is a route of enteral nutrition for children with feeding difficulties. This study investigated caregiver experiences of the transition to gastrostomy feeding. A survey was administered to caregivers of children <18 years in a major pediatric center in Ireland. Experiences of decision-making, support, and adjusting to tube feeding were examined. Seventy-six caregivers participated. Median satisfaction with the information provided by the hospital was high. Almost half (48%) spoke to another caregiver of a child with a gastrostomy prior to their own child's gastrostomy insertion and most (88%) felt reassured by this. Concerns following insertion included managing the tube and their child's oral intake and feelings about the tube. The oral intake of 83% of children who had some intake prior to gastrostomy insertion did not change or increased following insertion. Most (89%) would make the same decision to insert the tube. Feelings associated with the transition included relief and stress. Gastrostomy tube insertion presents logistical and psychosocial challenges for caregivers. Peer support from other caregivers may alleviate some of these challenges.

Abstract Objectives: The objective is to examine the experiences of parents regarding receiving a diagnosis of autism spectrum disorder (ASD) for their child and the factors influencing parental satisfaction with the process of diagnosis. Methodology: Eighty-five children (2-12 years) with ASD (DSM 5 criteria) were consecutively recruited from the department of pediatrics of a tertiary care hospital in north India over 2 years. A semi-structured questionnaire was used to elicit information regarding early developmental concerns, age at the first visit to a professional, kinds of professionals consulted, diagnoses considered, and time taken to receive a definitive diagnosis of autism. Parents were asked to self-report their level of satisfaction with the diagnostic process on a three-point scale. Results: Overall, the mean age at first parental concern was 2.16 years (standard deviation [SD] = 1.04). Parents on average waited for 7 months before consulting a specialist. The mean age of diagnosis was 4.67 years (SD = 2.42). Analysis of diagnoses received before the diagnosis of ASD revealed that despite early parental concerns, one-fourth did not receive any specific diagnosis, one-fourth of the parents were told that their child was developing normally, and the majority were misdiagnosed (42.4%). A definitive diagnosis of autism took nearly 2½ years from the time when parents first started to have concerns about their child's development. The majority (51.8%) of the parents reported being dissatisfied with their diagnostic experiences, and the level of satisfaction was primarily explained by the number of professionals consulted for a diagnosis of autism (F = 6.54, P = 0.012). Conclusions: The findings underscore the need to educate primary care clinicians regarding the early signs of autism and to be respectful of parental concerns to make a timely diagnosis of autism and initiate evidence-based early interventions.

The reintroduced Eastern Migratory Population (EMP) of Whooping Cranes (Grus americana) has exhibited appropriate breeding behavior, including pair formation, territory defense, nest building, and fertile egg production. However, recruitment has been lower than what is needed for a self‐sustaining population due to high chick mortality. During 2006–2023, 194 chicks hatched in the EMP, with only 36 surviving to fledging. For the population to succeed without continued releases of captive‐reared individuals, we must develop management strategies that increase recruitment to a level above mortality rates. We examined apparent weekly survival data of wild‐hatched Whooping Crane chicks collected via aerial and ground surveys using radio telemetry from 2006 to 2023. In this study, we explored relationships between chick survival and a host of potentially impactful predictor variables including parental experience, parental life history, habitat, ecoregion, weather, and climate, as well as nest and clutch characteristics using Cox Proportional Hazard Regression Models. Our results indicate that a chick without a sibling has an increased probability of survival. Survival probability also increased with collective parental experience and warm days (> 32°C) during the first 4 weeks after hatch. Our data indicate that parental experience is a reliable predictor of recruitment. Adult survival may therefore be indirectly linked with low chick survival as experienced adults are too often lost from this population. Additionally, our results suggest that efforts to collect a single egg from two‐egg nests may improve weekly survival of Whooping Crane chicks. The reintroduced Eastern Migratory Population (EMP) of Whooping Cranes (Grus americana) has experienced recruitment rates lower than what is needed for a self‐sustaining population due to high colt mortality. We examined weekly survival data of wild‐hatched Whooping Crane colts from 2006 to 2023 and explored relationships with predictor variables including parental experience, habitat, ecoregion, weather, and nest or clutch characteristics. Whether a colt had a sibling, if parents had more experience raising young, and warm days during the first 4 weeks after hatch were reliable predictors of crane colt survival.

As survivors of early cardiac surgery are at high risk of neurodevelopmental impairments, systematic health observations of children with critical congenital heart disease (CCHD) throughout childhood are recommended to enable early diagnosis and offer interventions to optimize neurodevelopment. A qualitative study using thematic analysis was performed to explore parents’ concerns, experiences, and needs regarding the development and received developmental care of their child (0–10 years) during hospital admission and beyond. Data were collected using semi-structured online interviews with 20 parents of children with CCHD. Four major themes were identified: (1) “impact of diagnosis and disease on the family-system,” (2) “parental concerns from diagnoses and beyond,” (3) “the need for information,” and (4) “the need for individualized and family-centered care.” The main themes can be divided into 13 sub-themes as impact, concerns, and needs are influenced by various impactful moments from diagnosis and afterwards.      Conclusion : This study confirms the importance of early identification of neurodevelopmental problems by experienced healthcare professionals, especially in the early years when parental expectations and concerns about their child’s neurodevelopment are lower. A tailor-made family-centered follow-up program should be offered, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system. Furthermore, an online portal is recommended with a variety of reliable, controlled, understandable information from which parents can obtain the desired information to understand better the consequences of specific heart condition and to provide their child with the best possible guidance. What is Known: • Survivors of early cardiac surgery are at high risk of neurodevelopmental impairments; systematic health observations of children with CCHD throughout childhood are strongly recommended. What is New: • Parents need a tailor-made family-centered follow-up program, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system. • An online portal offering diverse, trustworthy information and sources would effectively meet parents’ needs by providing accessible insights into the potential consequences of specific heart conditions and guiding them in supporting their child optimally.

A growing body of evidence suggests that bilingual exposure does not negatively impact children on the autism spectrum. This study sought to illuminate parents’ perceptions and choices regarding maintaining bilingualism in autism. Semi-structured interviews were conducted with 16 family members in England and Wales. Data were analysed using interpretative phenomenological analysis (IPA). Although parents expressed positive attitudes towards bilingualism, these views were not always congruent with their language practices. Instead, several factors influenced decisions about language maintenance in autism, including the severity of the child’s autism, advice received, and the importance of English as the dominant societal language. This article calls for greater support for families in making language decisions that are suitable for the individual child and their family.

Background Pediatric glaucoma is a rare but vision-threatening condition requiring complex, lifelong management. While clinical outcomes have been well-documented, little is known about the lived experiences of families navigating this condition, particularly in middle-income countries. This study aimed to explore how parents in Turkey experience and navigate the diagnosis, treatment, and ongoing care of a child with pediatric glaucoma. Methods We conducted a qualitative exploratory study using semi-structured interviews with parents of children diagnosed with pediatric glaucoma in Turkey. Twenty-two parents (17 mothers, 5 fathers) representing 20 children with various forms of pediatric glaucoma participated. Participants were recruited through pediatric ophthalmology clinics, social media, and snowball sampling. Interviews were conducted remotely, audio-recorded, transcribed verbatim, and analyzed using thematic analysis. Results Six major themes emerged: (1) Diagnosis Journey: Shock, Confusion, and the Search for Answers; (2) Treatment Burden: Managing Complex Care Regimens; (3) Navigating the Healthcare System: Structural Barriers and Facilitators; (4) Impact on Family Life: Adjustments, Limitations, and Emotional Tolls; (5) Coping and Resilience: Finding Strength Amid Challenges; and (6) Unmet Needs and Recommendations for System Improvement. Parents reported significant geographical disparities in access to specialist care, substantial financial burdens despite universal health coverage, and lack of psychological support and Turkish-language information resources. Parents demonstrated remarkable resilience through peer support networks, religious faith, and sophisticated medication management strategies, but identified critical gaps in the healthcare system that impeded optimal care. Conclusions Pediatric glaucoma affects not only vision but all aspects of family life, including finances, sibling relationships, and parental wellbeing. Findings highlight the need for family-centered care models that address both clinical and psychosocial dimensions of pediatric glaucoma. Implementing teleophthalmology services, developing regional expertise through hub-and-spoke models, integrating psychological support, and creating accessible educational resources in Turkish could significantly improve family experiences. This first qualitative study from Turkey provides insights relevant to other middle-income countries with similar healthcare systems.

Community-based mental health services for children and young people (CYP) can offer alternatives to inpatient settings and treat CYP in less restrictive environments. However, there has been limited implementation of such alternative models, and their efficacy is still inconclusive. Notably, little is known of the experiences of CYP and their parents with these alternative models and their level of satisfaction with the care provided. Therefore, the main aim of this review was to understand those experiences of the accessibility of alternative models to inpatient care, as well as overall CYP/parental satisfaction. A searching strategy of peer-reviewed articles was conducted from January 1990 to December 2018, with updated searches conducted in June 2019. The initial search resulted in 495 articles, of which 19 were included in this review. A narrative synthesis grouped the studies according to emerging themes: alternative models, tele-psychiatry and interventions applied to crisis, and experiences and satisfaction with crisis provision. The identified articles highlighted increased satisfaction in CYP with alternative models in comparison with care as usual. However, the parental experiential data identified high levels of parental burden and a range of complex emotional reactions associated with engagement with crisis services. Furthermore, we identified a number of interventions, telepsychiatric and mobile solutions that may be effective when applied to urgent and emergency care for CYP experiencing a mental health crisis. Lastly, both parental and CYP experiences highlighted a number of perceived barriers associated with help-seeking from crisis services.