Journal of Child Health Care最新文献

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.

Prescription for Play (P4P) is a social impact program delivered during 18-36-month well-child checks to promote caregiver-directed play. To understand the impact of P4P on caregiver outcomes and whether it can be feasibly delivered in safety-net settings, this research evaluated P4P's implementation across six federally qualified health centers (FQHCs). The association of P4P on caregiver outcomes was assessed using an interrupted time series design in which two separate caregiver samples completed surveys before (n = 180) and after (n = 262) P4P implementation. Implementation of P4P was further assessed using a mixed methods evaluation of 27 staff surveys, 25 staff interviews, and 44 clinic observations. Caregivers reported positive views towards play and a strong desire to play with their children before and after P4P implementation; independent samples t-tests showed that group differences were not statistically significant for any survey construct. Triangulation of quantitative and qualitative implementation data showed that P4P can be implemented as designed within varied FQHC settings and is acceptable among clinic staff. AlthoughP4P does not appear to influence caregivers' positive views of and strong investment in play, this study offers important evidence that P4P can be implemented to fidelity within FQHCs, supporting its feasibility for delivery in safety-net settings.

In 2019, an estimated 5.2 million deaths were reported among children less than 5 years of age. At primary healthcare level, healthcare workers (HCWs) mostly rely on history and clinical findings and less on inadequate diagnostic facilities. To enhance case management skills of HCWs, World Health Organization devised an integrated management of childhood illnesses (IMCI) strategy in 1995, modified to distance learning IMCI in 2014. A qualitative phenomenological study was conducted to explore perceptions of HCWs about standard and distance IMCI. Four focus group discussions were conducted with purposively selected 26 HCWs (IMCI trained) from 26 basic health units of Abbottabad district in Pakistan. Gadamer's philosophical hermeneutics were adopted during the inductive thematic analysis. Five themes that emerged are inexorable health seeking behaviors, IMCI being a comprehensive algorithm for consultation, a tedious protocol, scaling up protocol to specialists and private practitioners, and administrative insufficiency by the department of health. Improvement in case management skills of HCWs was reported as a result of IMCI trainings. It needs administrative support, regulations to control poly-pharmacy and provision of drugs without prescription, and a curb on political and bureaucratic interference.

Research partnerships between researchers and knowledge users (KUs) in child health are understudied. This study examined the scope of KU engagement reported in published child health research, inclusive of health research partnership approaches and KU groups. Search strategies were developed by a health research librarian. Studies had to be in English, published since 2007, and were not excluded based on design. A two-step, multiple-person hybrid screening approach was used for study inclusion. Data on study and engagement characteristics, barriers and facilitators, and effects were extracted by one reviewer, with 10% verified by a second reviewer. Three hundred fifteen articles were included, with 243 (77.1%) published between 2019 and 2021. Community-based participatory research was the most common approach used (n = 122, 38.3%). Most studies (n = 235, 74.6%) engaged multiple KU groups (range 1-11), with children/youth, healthcare professionals, and parents/families being most frequently engaged. Reporting of barriers and facilitators and effects were variable, reported in 170 (53.8%) and 197 (62.5%) studies, respectively. Publications have increased exponentially over time. There is ongoing need to optimize evaluation and reporting consistency to facilitate growth in the field. Additional studies are needed to further our understanding of research partnerships in child health.

Paediatric Palliative Care Ambulance Plans ('Plans') are used by New South Wales Ambulance (Australia) to support the care needs of children with life-limiting conditions. We aimed to describe the population of children with Plans and provide details regarding Plan completion, paramedic responses during ambulance callouts, and correspondence between Plan recommendations and paramedic responses. Plans lodged in January 2017-December 2019 were retrospectively coded for demographic information, completeness and care preferences. Associated paramedic callout notes (January 2018-December 2019) were coded for paramedic responses. Of 141 Plans retrieved, 38 (41.3% of those providing suggested medications) suggested medication use outside general paramedic scope of practice. Of 199 associated ambulance callouts, reasons for callout included symptom management, planned transfer, death notification and end-of-life care. Over two-thirds of callouts (n = 135, 67.8%) occurred after-hours. Most paramedic callouts (n = 124, 62.3%), excluding planned transfers, resulted in children being transported. Paramedic interventions corresponded with interventions suggested in Plans. However, only 24 (25.3%) of paramedic callout notes documented Plans being sighted. This study provided detailed information about children with palliative care needs for whom Plans were being used, the nature of these Plans and associated paramedic callouts. However, it is not known how paramedics were influenced by Plans.