Journal of Child Health Care最新文献

Hirschsprung's disease is a common cause of lower intestinal obstruction in newborns. It has variable postoperative outcomes affecting quality of life. The study was aimed at assessing postoperative bowel function in children with Hirschsprung's disease. It was conducted on 120 children operated for Hirschsprung's disease. A structured questionnaire for bowel function score was used and analyzed using relevant statistical tests. Of the 120 children in the study, 97 (80.8%) were male with 49 (40.8%) diagnosed during neonatal age and others by 2 years of age. Ninety-three (77.5%) of them had the classic type. Diversion colostomy was done in 104 (86.6%), and two-staged endorectal pullthrough was performed in 62 (72.5%) of cases with a 16% rate of retained aganglionosis. Postoperative continence was excellent in 46 (57%) and good in 26 (32%) with an incontinence rate of 11%. None of the outcome predictor showed significant influence. Optimal postoperative bowel function was obtained in the majority of patients with two-stage procedures, and the overall outcome of bowel function in children was not influenced by age, gender, level of aganglionosis, and type of procedure. Longer follow-up periods are required for definitive information.

The Care for Child Development (CCD) program may improve child development outcomes in resource-limited settings, but has not yet been adapted to group-based settings to facilitate sustainable dissemination. In this study, we determined the acceptability and feasibility of a group-based CCD program, with evaluation of program outcomes for child development, home environment, and symptoms of maternal depression as secondary outcomes. We evaluated this adapted program using a 2 × 2 crossover-designed pilot study administered over 10 bi-weekly sessions. Acceptability and feasibility were assessed through focus group discussions using qualitative methods. Child development, home observations, and symptoms of maternal depression were evaluated at baseline, 6 months, and 12 months and assessed quantitatively. Twenty-six mother-child dyads participated. Overall, they perceived CCD as acceptable and feasible, and especially beneficial within its group-based format. Although there were no measured improvements in child development, improvements in stimulating home environments (mean difference 2.5, 95% C.I. [0.37, 4.72]) were found. Further scale-up of this intervention is needed to determine effectiveness.

Play has positive effects on children's well-being and development. Play heroes, in Danish, called "Legeheltene", have worked, for the last 7 years, to improve play and movement for hospitalized children in Danish hospitals. However, the significance of this novel Danish intervention is insufficiently researched. This phenomenological-hermeneutic study explored how children experience interacting with a play hero when hospitalized at a Danish paediatric unit. Combined observations and interviews were performed with children from two paediatric departments. Data were analyzed with inspiration from the French philosopher Paul Ricoeur. Three themes were identified: "A sense of familiarity," "From loneliness to connectedness," and "Becoming more powerful." Children experience that interaction with play heroes is existentially meaningful. Through playful activities, children experience that they are connected to their daily lives outside the hospital and their true selves. Bridges to children's everyday lives are built, leading to an improved sense of freedom, security, and the ability to manage difficult aspects of their hospital stay. Engagement with play heroes provides children with an experience of well-being and can be a positive direction in care provided to hospitalized children.

Children with cerebral palsy (CP) and their families face a wide range of healthcare services. Evidence suggests that this care should be family-centered (FCC). The purpose of this systematic review and meta-analysis was to gather the existing evidence about the experience of children with CP, families, and professionals with FCC through the Measure of Processes of Care (MPOC) and analyze the different perspectives in the population groups, determining which aspects of this model are more entrenched and which need special attention to improve. A search of the peer-reviewed literature in five databases was conducted. The included studies were assessed using the relevant Joanna Briggs Institute tool and a meta-analysis was performed. Fifteen articles were included, in which any version of the MPOC was used for both families and professionals. However, no article reporting the experience of children was found. The domains related to "Information provided" were the lowest rated by families and professionals, so special attention should be paid to this. The highest average score was for "Respectful care," both families and professionals agree that the treatment provided is characterized by respect and dignity. Recommendations are provided to start collecting this kind of information for children with CP.

Advancements in life-sustaining technologies have extended the lives of children with medical complexities, increasing demand for substantial healthcare services. Caring for these children requires significant caregiver time and energy, affecting their well-being. These experiences highlight a critical need for psychosocial interventions-like legacy-building-to foster adaptive coping, facilitate meaning making, and optimize outcomes for this population. This study explores how parents/caregivers of medically complex children perceive and experience the concept of legacy. Thirty-one parents/caregivers participated in semi-structured interviews, which were analyzed using inductive coding. Three themes emerged: (1) legacy is both what you leave behind and what you live right now, (2) legacy inspires change, and (3) legacy is shaped by healthcare experiences. Findings highlight the need for inclusive, adaptable legacy-building practices that address families' unique needs and enhance psychosocial support for this population.

This study examined the lived experiences of adolescents and young adults (AYA) with chronic illnesses at a safety net hospital, with nearly 90% identifying as ethnically and racially minoritized. Interviews were conducted with patients (N = 19) aged 16-20 years old, who are living with at least one chronic illness. Interviews were coded and analyzed using thematic analysis. Four themes captured the impact of illness and resilience processes: (1) My Condition Affects My Body, (2) My Condition Restricts My Life, (3) My Condition Impacts My Emotional Well-Being, and (4) I Can Still Be Healthy. Themes were verified through a Community Advisory Board of AYA with chronic illness. Participants described how symptoms, side effects, and restrictions negatively impact their physical and emotional well-being. Despite challenges, AYA demonstrated resilience through individualized, trial-and-error coping strategies that buffered illness-related distress. These findings underscore the importance of culturally responsive, developmentally appropriate interventions to support the well-being of minoritized AYA with chronic illness.

The aim of this scoping review was to identify and map available evidence on cultural adaptation elements incorporated into child health knowledge translation (KT) tools for parents. A search of eight databases was conducted (2001-2024). Two reviewers worked independently for screening, study selection, and data extraction. Extracted data included number and type of cultural adaptations, and approach taken to performing cultural adaptation. Studies were then categorized and mapped by these attributes, and sub-categories emerged based on patterns of occurrence between included studies. Of 3946 unique articles, 20 met the inclusion criteria. Three main types of cultural adaptation elements were described: (a) language, (b) visual representations, and (c) cultural values. The most common child health conditions of included studies were autism spectrum disorder (ASD), attention-deficit hyperactivity disorder (ADHD), and asthma. Further exploration of cultural values and their inclusion in KT tools is needed to meet the information needs of culturally and linguistically diverse (CALD) families. The findings from this review underscore the necessity for further research to explore cultural adaptation processes required to develop child health KT tools to assist clinicians and provide more targeted, culturally relevant support for CALD parents.

The objective of this study was to elicit caregiver perspectives regarding vital components of and challenges to participating in post-extracorporeal membrane oxygenation (ECMO) follow-up care. It was conducted as a single-center electronic survey in a tertiary pediatric hospital with neonatal and pediatric ECMO capabilities. Pediatric survivors less than 18 years of age who survived ECMO between January 2015 and December 2020 were included. An attempt was made to contact 143 eligible families. Fifty of the ninety-three (54%) families who were successfully contacted consented and provided survey responses. Thirty (60%) pediatric ECMO survivors were male, with a median age of 3 months at cannulation and an ECMO duration of 92 h. Eleven (37%) children were categorized as having "fair" or "poor" overall health after ECMO therapy. A majority of respondents were either "extremely likely" or "somewhat likely" to participate in an in-person or virtual multidisciplinary ECMO follow-up (31 (66%) and 36 (77%), respectively). In response to open-ended survey questions, parents expressed need for increased support in three main domains: information/education, psychosocial support, and healthcare coordination. These findings suggest an urgent need to establish a structured, multidisciplinary ECMO follow-up program and to include parents and patients in its development.

Osteogenesis imperfecta (OI) is a heritable connective disorder with clinical manifestations including bone fragility and short stature. Previous research identified psychosocial themes related to mental health among children with OI and their caregivers, such as independence, social isolation, depression, and anxiety. Several studies have also examined clinicians of individuals with OI for their perspectives on mental health among their patients. However, no known studies have compared psychosocial themes among all three participant groups concurrently. This qualitative study examined mood and anxiety, along with risk and protective factors, from perspectives of youths, parents, and clinicians. Semi-structured interviews were conducted, which were coded independently by two researchers. Codes were analyzed for extraction of themes. Relevant themes include depressed and anxious mood experienced in individuals with OI, as well as risk factors and protective factors for these symptoms. Participants reported functional limitations and social isolation as key risk factors for symptoms of anxious or depressed mood. In contrast, they discussed positive attitudes, social support, multidisciplinary medical groups, and mental health access as key protective factors. Implications for clinical care and future research are discussed. Convergence and divergence of themes across study samples are discussed in detail.

Pediatric tracheostomy and post-tracheostomy care contribute significantly to total pediatric hospitalization costs and time in hospital. Therefore, we revised our family education methods and reset expectations for post-tracheostomy length of stay (PTLOS), while enabling caregivers to safely manage their children at home with minimal or no professional in-home assistance. At an academic pediatric center, a 14-day tracheostomy education plan, formed by a multidisciplinary team, was enacted. Patient PTLOS and readmission rates were monitored from November 2020 to December 2021 and compared to historical institutional averages for 36 patients. We provided instruction to a total of 184 RNs and RTs on how to teach standardized methods of home tracheostomy care. Following implementation of a new educational curriculum, there was a significant reduction in PTLOS from 78 to 39 days, a decrease of 50% in PTLOS. Post-tracheostomy readmission rate remained stable. Implementation of a multidisciplinary post-tracheostomy education plan which emphasizes preoperative preparedness, efficient family education, and reset expectations of success can reduce PTLOS without increasing hospital readmission rates.