Journal of Child Health Care最新文献

Parental presence during pediatric resuscitation presents a complex challenge, often provoking mixed reactions from healthcare providers and families. This qualitative study explored how decisions about parental presence emerge from the experiences and perceptions of resuscitation teams and parents. An exploratory descriptive design was used across three pediatric hospitals. Data collection involved semi-structured interviews with 33 resuscitation team members and 20 parents who witnessed their child's resuscitation. Thematic analysis identified patterns for participant accounts. Participants shared their experiences and perceptions regarding decision-making about parental presence during pediatric resuscitation. Two main themes emerged: (1) Double-edged sword of parental presence (reluctance to allow parental presence; permission for parental presence) and (2) emotional weight of parents' decision to be present (decision to be present; indecision regarding presence). Findings highlight that parental presence involves balancing team readiness, environmental factors, and parental emotional state. Institutional policies should support offering presence as an option, reinforced by staff training and structured pre-briefing and debriefing to promote shared decision-making and strengthen family-centered care.

Pediatric transitions significantly impact continuity of care and the well-being of children and their families. Poorly managed transitions may lead to hospital readmissions, medication errors, and caregiver distress, highlighting a critical need for evidence-based improvements. This scoping review identifies key challenges in pediatric hospital-to-home transitions, maps existing literature gaps, and proposes research priorities with actionable strategies for improvement. We analyzed studies on transition difficulties, intervention effectiveness, and the role of emerging technologies such as telemedicine. The review also explored caregiver perspectives and experiences, which are critical for successful transitions. Key challenges include suboptimal treatment adherence, inadequate caregiver understanding of discharge instructions, and unequal access to follow-up care. Despite recent progress, significant gaps remain in effectively implementing solutions across diverse populations and socioeconomic contexts. Research priorities involve integrating telemedicine into transition protocols, improving caregiver education, and ensuring equitable access to post-discharge resources. Addressing these challenges requires adaptable, evidence-based interventions to improve care transitions. Prioritizing these efforts can achieve safer and more effective pediatric hospital-to-home transitions, ultimately improving outcomes for children and their families.

Navigating through a child's cancer treatment journey is challenging for a family. Understanding family members' experiences helps identify their needs and how they can be supported during a child's cancer treatment. This study aimed to explore parents' perceptions of how their child's cancer treatment impacts family members' well-being and family dynamics. Semi-structured interviews with parents of children diagnosed with cancer (N = 18) were conducted to explore parental perceptions of family members' experiences. Data were analysed using reflexive thematic analysis. Four themes were generated: disruption to daily life and relationships, impact on siblings, parents' emotional and psychological impact and role changes, and navigating separation and family dynamics during treatment. This study provides important contributions to a broader understanding of how family members are affected, from a parental perspective, during childhood cancer treatment in the UK. Enforced separation of family units during hospital stay has an impact on family dynamics and family members' well-being. This study highlights parents' need for support and important considerations for healthcare professionals implementing family-based support during paediatric cancer treatment.

Pain in hospitalised children is common, yet inadequately treated. Electronic medical records (EMRs) can improve care quality and outcomes during hospitalisation. Little is known about how clinicians use EMRs in caring for children with pain. This national cross-sectional survey examined the perceptions of clinician-EMR users about current and potential use of EMRs in children's pain care. One hundred and ninety-four clinicians responded (n = 81, 74% nurses; n = 21, 19% doctors; n = 7, 6% other); most used Epic (n = 53/109, 49%) or Cerner (n = 42/109, 38%). Most (n = 84/113, 74%) agreed EMRs supported their initiation of pharmacological pain interventions. Fewer agreed EMRs supported initiation of physical (n = 49/113, 43%) or psychological interventions (n = 41/111, 37%). Forty-four percent reported their EMR had prompt reminders for pain care. Prompts were perceived as useful (n = 40/51, 78%). Most agreed EMRs supported pain care provision (n = 94/110, 85%) and documentation (n = 99/111, 89%). Only 39% (n = 40/102) agreed EMRs improved pain treatment, and 31% (n = 32/103) agreed EMRs improved how they involve children and families in pain care. Findings provide recommendations for EMR designs that support clinicians' understanding of the multidimensionality of children's pain and drive comprehensive assessments and treatments. This contribution will inform future translational research on harnessing technology to support child and family partnerships in care.

Practices for promoting a child's best interests in rehabilitation are not sufficiently understood. This study describes the practices from the perspectives of professionals and parents of children with disabilities. We conducted 11 interviews: 5 in focus groups with professionals (n = 27 [69%]), 3 with parents (n = 9 [23%]), and 3 individual interviews of paediatric neurologists (n = 3 [8%]). We used a qualitative approach, which included inductive content analysis, to examine the transcribed interview data. The practices for promoting a child's best interests consisted of collective framing of child-specific rehabilitation, fostering a fulfilling daily life for the child, and ensuring appropriate rehabilitation. This was enhanced by using child-specific practices and comprehensively understanding the child's rehabilitation in everyday life but was hindered by the absence of an established process and guidelines. The results highlighted substantial challenges in collaboration aligned with the child's best interests, enabling the child's active participation, and addressing the individual needs of the child and family. Promoting best interests through family-professional partnerships by using a systemic and ecological approach could guide the rehabilitation process and ensure the child's right to participate.

Unsettled infant behaviours are highly prevalent in the postnatal period and constitute a significant proportion of visits to healthcare services. Unsettled infant behaviours can be highly distressing for parents and are identified as a significant risk factor for postnatal depression. Understanding parents' experiences is paramount to reducing the gap between consumer expectations and service delivery. This study employed a qualitative descriptive approach to explore parents' experiences seeking healthcare advice for their infant with unsettled behaviours. Semi-structured interviews were conducted with 20 mothers. Inductive thematic analysis yielded two overarching themes: (1) 'the journey for answers', consisting of five sub-themes, and (2) 'parents' knowledge and behaviours', consisting of six sub-themes. Despite some positive interactions with healthcare services, mothers generally spoke negatively of their overall experience seeking answers and receiving care for their infant, and they felt the healthcare services they attended were not equipped to meet their needs. To address the gap between service delivery and consumer expectations, mothers relied on online communities for advice and emotional support. The findings of this study highlight several discrepancies between mothers' expectations and service delivery in the context of unsettled infant behaviours, and this paper makes recommendations to address identified shortcomings in approaches to care.

Research with siblings of children with congenital heart disease (CHD) is scarce, although more than one-third of them experience limitations on their quality of life. This interview study aims to explore the diagnosis-associated experience of German siblings of children with CHD, their interest in a potential intervention, and potential key topics and contextual conditions of such an intervention. Interviews with 10 siblings aged 10 to 21 and a respective parent were conducted from August to October 2021, resulting in 20 interviews. Negative experiences associated with CHD included concerns regarding hospitalization, health deterioration, and the death of the child with CHD, as well as burdens including reduced family activities, less parental attention and support, and extended family meals. Positive experiences included perceived positive consequences of CHD, such as strong family cohesion and empathy toward people with chronic illnesses. Furthermore, siblings experienced enhanced coping mechanisms, such as having conversations with friends and family about the high prevalence of CHD and successful treatment or using distractions such as entertainment or study. Siblings' reported interest in a future intervention included empathy, peer support, and studying medical information on CHD. These findings should be used for counseling and developing tailored interventions to support these siblings.

The current systematic literature review aimed to summarize and evaluate existing literature regarding parental relationship functioning during and after childhood cancer, with an exploratory evaluation regarding the impact of national health coverage model (proxy for finances). This review used MEDLINE, PsychInfo, Embase, and CENTRAL search database. Articles were reviewed (N = 3060) against inclusion criteria, with 512 abstracts screened and 87 full-text retrieved and reviewed. Inclusion criteria: (1) childhood cancer, (2) measures parental relationship functioning, (3) English, and (4) new, empirical data. A modified version of the Downs and Black checklist was used to assess risk of bias. Narrative synthesis was used to present and discuss results. Final included articles (N = 36) revealed mostly positive or neutral findings across parental relationship functioning subdomains within 6 months (T1) and after 6 months (T2) of childhood cancer diagnosis. Sexual intimacy was negatively impacted across timepoints. Parental stress was higher than norms at T1. Marital conflict and adjustment were also worse at T1 but returned to previous levels at T2. Some variability in parental relationship functioning was observed among the different health coverage models, but these differences were not significant. Results support systematic screening and systems-based parent support programs for families of children with cancer. Mixed-methods studies examining parental relationships longitudinally and utilizing operational definitions for out-of-pocket spending are needed.

With a growing 25.5 million people in the United States experiencing limited-English proficiency (LEP), there is a concern over these individuals' experiences in healthcare. Health outcomes of LEP status are well-documented for adults in hospitals; however, less is known about patient experience, pediatric populations, and primary care settings. This study investigated differences in caregiver satisfaction between families with and without LEP receiving healthcare for their child. A sample of 25,118 caregivers whose children from birth to 17 years had met with any healthcare providers in the past year was used. Analyses consisted of unpaired t-tests comparing mean satisfaction of LEP and English-proficient (EP) caregivers in the domains of how often primary healthcare providers spent enough time with the child, listened, provided specific information, demonstrated sensitivity to the family's values, and made the respondent feel like a partner. In all aspects of caregiver satisfaction, mean satisfaction scores were significantly lower for LEP caregivers than EP caregivers. The largest drops were seen in perceived time and sensitivity. These results highlight a need to ensure LEP families receive equitable and high-quality primary care services, ultimately building trust in the healthcare system and improving children's health and well-being.

This study addresses the paucity of research on parents of extremely preterm adolescents (born <27 weeks of gestation) and their experiences within the framework of parental determinism. We conducted semi-structured interviews with twenty-two mothers and one father. Data were analysed thematically, revealing three overarching themes and eight subthemes shaping parental accounts. These themes centred on parental ambitions for their children, their perceptions of their child's abilities, and the parenting behaviours employed to support parental aspirations. Parents' actions were influenced by their ambitions and the belief that they could impact their child's future independence. While some parents adopted 'trusting', non-intensive parenting behaviours, those anticipating challenges for their child's future independence resorted to intensive parenting practices. These findings align with the concept of parental determinism, emphasising the perceived causal link between present parental actions and future child outcomes. In the context of extreme prematurity, a nuanced understanding of parental perceptions regarding their child's future independence aligned with a delicate balance between hope and realistic aspiration is crucial for enhancing parental support and well-being.