Journal of Child Health Care最新文献

Children with medical complexity (CMC) are regularly admitted to inpatient care units to receive medical care. While admissions for CMC and their parents can negatively impact their health and well-being, mapping of evidence in this area appears underreported. A scoping review using the Joanna Briggs Institute methodology was conducted to map evidence on CMC and parents' experiences of care. The purpose of this paper is to report the findings from the scoping review specific to CMC and parents' experiences of care on their health and well-being. A total of 24 articles were synthesized, and themes included: psychological impacts for parents, impacts on functions of daily living, parents' coping strategies for psychological well-being, impacts of hospitalization on CMC, CMC coping strategies, spirituality, and interventional studies. Findings from this review demonstrate that CMC and their parents struggled with their psychological and emotional well-being and that both CMC and parents coped with the stress of hospitalization in a variety of ways. Healthcare professionals need to be educated on how to support CMC and their parents during hospitalization. Future development and implementation of innovative care models and interventions that offer CMC and their parents with enhanced psychosocial support are recommended.

Treatment adherence is important but challenging for young people with inflammatory bowel disease (IBD). Behavioural interventions may support adherence, leading to improved condition management. This review aimed to evaluate interventions designed to improve treatment adherence in young people (aged 13-18) with IBD and identify their use of behaviour change theory and behaviour change techniques (BCTs). Five databases (PsycInfo, Embase, MEDLINE, Web of Science and Scopus) were searched to identify eligible articles published between 1980 and 2022. Articles were critically appraised using the Mixed Methods Appraisal Tool. Findings were synthesised narratively. Seven articles reporting seven oral medication adherence interventions were included. Study designs included five randomised controlled trials and two single-arm clinical trials. Eleven BCTs were identified across seven articles. No article discussed how an intervention was informed by behaviour change theory. Interventions that included additional family members and/or offered tailored adherence support generally had greater effects, as did interventions including education and goal setting components. Reporting of intervention content was poor, limiting our ability to make concrete recommendations regarding intervention effectiveness, use of behaviour change theory and BCTs. Further research is needed to understand how theory-driven behaviour change interventions can improve treatment adherence in young people with IBD.

There can be adverse psychosocial outcomes for children who have negative healthcare experiences. Identifying children's risk for experiencing elevated distress early on when entering the healthcare setting would allow targeted, proactive support to help mitigate negative psychological sequelae. The aim of this retrospective study was to evaluate the psychometric properties of the Pediatric Emotional Safety Screener (PESS), designed to screen for psychosocial distress for pediatric patients. A Child Life Department conducted a program evaluation, screening 1643 patients using the PESS in six different service areas including acute inpatient, critical care, emergency department, radiology, surgery, and ambulatory clinics. Certified child life specialists (CCLS) completed a Psychosocial Risk Assessment in Pediatrics (PRAP) and provided their assessment of priority level for child life support for each patient screened. Secondary analysis of the data evaluated the psychometric properties of the PESS. Findings indicated good internal consistency for the PESS. PESS scores significantly correlated with both PRAP scores and CCLS priority level. The PESS is a promising standardized method for health-care providers to screen pediatric patients' risk for experiencing significant distress during their healthcare visit to determine the need for support from a CCLS.

Using a blended diet as an alternative to commercial formula is becoming more popular amongst parents and carers of children and young people (CYP) requiring long-term enteral tube feeding (ETF). Emerging evidence has demonstrated physiological and social benefits; however, families report feeling unsupported to use a blended diet in settings outside the home. This study aimed to explore the attitudes of health and social care staff towards the use of blended diets for CYP. Health and social care professionals with experience of blended diets were invited to partake in an online semi-structured qualitative interview. Thematic analysis was used to identify themes. Five participants from health, education and social care settings were interviewed. Online interviews worked effectively for data collection to allow flexibility to accommodate participants' care roles and avoid face-to-face contact necessary with Coronavirus disease 2019 restrictions. Three themes were identified in the data:• Change from medicalised enteral tube feeding practice.• Individual, person-centred approach.• Open support networks and responsibility.Findings showed that blended diets can be accommodated; however, barriers to implementation remain. Medicalisation of ETF continues to impair acceptance of blended diets whilst effective multi-disciplinary team communication and support facilitates its use in settings outside the home.

Learning to communicate with infants in a neonatal unit setting is challenging. Parents need time and support to feel confident and acquire skills that enable them to care for, be close to, and communicate with their infant. This qualitative, narrative-based study sought to investigate parents' understanding of factors that enhance or prevent the development of early communication and interaction between preterm infants and parents within a neonatal setting. Our study used a narrative interview approach with eight parents of premature infants, to explore the enablers and challenges to communication. Reflexive thematic analysis revealed four main themes: Impact of being in the neonatal unit, different communication strategies, communication barriers and an ongoing need for support at home. Our findings provide parental insight into communication between themselves and their premature infants. Overall, parents spoke highly of communication strategies that they were taught but it was clear they received varying advice and support, in the neonatal unit and post-discharge. There is a need for clear, consistent, and culturally appropriate communication strategies with greater awareness of how to facilitate them. Since failure to enable parent-infant interactions may potentially mean delayed language development, there is an essential need for tailored parent-accessible resources.

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.