Background

Childhood functional constipation, a common concern within child healthcare, necessitates oral and rectal medical treatments, that are mostly administered by parents in the home environment. It is important to gather children’s perspectives in child- and family-centred care. The private nature of toileting, bowel movements, and faecal incontinence are areas of taboo and stigmatisation. Research is scarce on how children perceive this common but private situation of oral and rectal constipation treatment.

Objective

To explore children’s experiences of functional constipation and its treatments.

Design

A qualitative interview study with a constructionist epistemology and a predominantly experiential orientation.

Setting

Individual interviews were conducted in the child’s home, in the child’s familiar outpatient clinic, or on university premises. Open and permissive conversations about bowel habits, constipation, medical treatments, faecal leakage, and related feelings were digitally recorded and transcribed.

Participants

Twenty children (thirteen boys and seven girls) with functional constipation, aged 6–14 years, from four different outpatient clinics in southeast Sweden, who had experiences of oral and rectal medical treatments, were purposively recruited. Exclusion criteria were anorectal malformation or prior rectal surgery.

Methods

Transcripts were analysed using reflexive thematic analysis by Braun & Clarke.

Findings

This study provides a deeper understanding of why children choose not to go to the toilet. It explains how children perceive constipation treatment as simultaneously good and bad, and describes how faecal incontinence is strongly associated with the fear of exposure. The study also outlines the hopes and prospects of a cure. Four themes were created: 1) Procrastinating toilet visits – focus elsewhere, 2) Dreading exposure in a vulnerable position, 3) Enemas, a nightmare and a relief, 4) A doubtful hope during the treatment journey.

Conclusions

Care providers must acknowledge and validate the child’s perspective in constipation treatment situations. Our study provides an understanding of this perspective, which should be incorporated into clinical conversations with children about their diagnosis and proposed constipation treatment regimen. Adopting an approach that acknowledges children’s views based on this new information may enhance collaboration between care providers, parents, and children during constipation care.

Background

A sensitive, well-functioning maternal interaction is vital for healthy infant development. For moderate to late preterm infants, this is even more important as this group of infants are at increased risk of facing neurodevelopmental disorders. The Early Collaborative Intervention supports parent-preterm infant interaction and includes three sessions, two in the hospital and one after discharge.

Objective

To investigate the impact of the Early Collaborative Intervention, compared with standard care, on mother-preterm infant interaction at one month corrected age.

Design

A longitudinal randomized controlled trial, reporting secondary outcomes from the first follow-up. SettingThe intervention was conducted at a pediatric center with two neonatal intensive care units with an infant and family centered approach. The intervention was evaluated in the homes of the families.

Participants

Families with preterm infants born in gestational week 30+0–35+6 (n = 143) were randomized. In this one-month follow up a total of 101 families participated, (standard care with the Early Collaborative Intervention, n = 60, standard care, n = 41).

Methods

The mother-infant interactive behavior was videotaped during a bath and later analyzed with Ainsworth’s Maternal Sensitivity Scales and the Emotional Availability Scales. The coder was masked to group randomization as well as to demographic data of the dyads.

Results

In the analysis the maternal mean scores were statistically significantly higher for the intervention-group versus the standard care group in the Availability subscale, 7.30 vs 6.29 (CI 0.01–0.86, p = 0.045, Cohen’s d 0.43), and Acceptance subscale, 8.00 vs 7.22 (CI 0.12–0.97, p = 0.012, Cohen’s d 0.55), in the Ainsworth’s Maternal Sensitivity Scales. Mean score were also statistically significantly higher for the intervention-group versus the standard care group in the Non-hostility subscale, 6.60 vs 6.12 (CI 0.11–0.97, p = 0.013, Cohen’s d 0.54), in the Emotional Availability Scales. The results suggest that these aspects of maternal interactive behavior towards her infant, are the ones most influenced by the Early Collaborative Intervention.

Conclusions

The Early Collaborative Intervention had beneficial impacts on maternal interactive behavior for those who took part in three sessions or more of the intervention program.

Registration

The project was registered in ClinicalTrials.gov with the number: NCT02034617, registered 19/12/2013, date of the first recruitment 15/01/2014.

Fathers and/or non-birthing partners are now actively involved in child-rearing globally; however some experience emotional difficulties during the perinatal period. With the birth of a preterm infant, parents experience additional stress beyond that normally engendered by having a baby, which can impact on parent-infant relationship and infant development. In Australia, there is limited evidence on fathers' experiences of preterm birth. Thus, this study aimed to explore the experiences of Australian fathers of preterm infants including their emotional and physical wellbeing when they have a preterm infant. Narrative inquiry guided the study; 13 fathers whose preterm infant was admitted to Australian neonatal units participated in in-depth interviews lasting 22-72 min. Data analysis generated four themes: (i) emotional response, (ii) fathers' wellbeing, (iii) fathering in neonatal unit and during transition home (iv) fathers' needs in the neonatal unit. The findings revealed that fathers felt emotionally overwhelmed, had specific needs but their role in the neonatal unit was not well defined and they felt mothers were given more attention. Despite feeling excluded, many continued to support their partner and infant. Health professionals must be aware of their unconscious biases toward gender roles in the neonatal unit and utilize strategies to actively include fathers and non-birthing partners.

IntroductionDespite a growing multidisciplinary interest in the Child and Family Centred Care approach, its meaning remains unclear in extant literature. It is, therefore, crucial to explore, analyse, describe, and clarify the concept of the Child and Family Centred Care approach and its associated terms. MethodA three-phased principle-based concept analysis approach was used to analyse the concept of Child and Family Centred Care. A systematic search of literature was completed using the CINAHL, PsycINFO, Medline, Scopus, and Web of Science databases. Peer-reviewed articles on Child and Family Centred Care, published from inception to 2023 were included if they were available in English and discussed children aged zero to 17 years, healthcare providers, and/or caregivers. A systematic screening of articles was undertaken to remove duplicates and articles that did not meet the inclusion criteria. A concept quality criteria assessment was performed independently based on a recommended appraisal tool. ResultsFull texts of the retained 23 titles were included in the deductive thematic analysis. Guided by the three-phased principle-based concept analysis approach, data were grouped into epistemological, pragmatic, linguistic, and logical principles. The study revealed various characteristics of the concept of interest to highlight the common terms associated with the concept, primarily being collaboration, participation, communication, and respect/dignity. Conclusions and ImplicationsThis concept analysis provides a theoretical definition of the Child and Family Centred Care approach. The definition emphasises the child as an individual and an active collaborator with healthcare providers and their family. Standardised language improving health outcomes, patient satisfaction, and healthcare systems. No Patient or Public Contribution.

BACKGROUND: In adults, cortisol levels show a pronounced 24-hour rhythm with a peak in the early morning. It is unknown at what age this early-morning peak in cortisol emerges during infancy, hampering the establishment of optimal dosing regimens for hydrocortisone replacement therapy in infants with an inborn form of adrenal insufficiency. Therefore, we aimed to characterize daily variation in salivary cortisol concentration across the first year of life.

METHODS: We conducted a systematic review followed by an individual participant data meta-analysis of studies reporting on spontaneous (i.e., not stress induced) salivary cortisol concentrations in healthy infants aged 0-1 year. A one-stage approach using linear mixed-effects modelling was used to determine the interaction between age and time of day on cortisol concentrations.

FINDINGS: Through the systematic review, 54 eligible publications were identified, reporting on 29,177 cortisol observations. Individual participant data were obtained from 15 study cohorts, combining 17,079 cortisol measurements from 1,904 infants. The morning/evening cortisol ratio increased significantly from 1.7 (95% CI: 1.3-2.1) at birth to 3.7 (95% CI: 3.0-4.5) at 6-9 months (p < 0.0001). Cosinor analysis using all available data revealed the gradual emergence of a 24-hour rhythm during infancy.

INTERPRETATION: The early-morning peak in cortisol secretion gradually emerges from birth onwards to form a stable morning/evening ratio from age 6-9 months. This might have implications for hydrocortisone replacement therapy in infants with an inborn form of adrenal insufficiency.

AimThis study aimed to determine the longitudinal impact of the EArly Collaborative Intervention (EACI), a three-session early intervention designed to enhance parent-infant interaction, on the developmental outcomes of preterm infants born between 30 + 0 and 35 + 6 weeks of gestation.MethodsThis randomised controlled blinded study recruited families in two neonatal intensive care units in Sweden. In this one-year follow-up, 87 infants (standard care = 37, standard care with EACI = 50) were included in the intention-to-treat analysis. The primary study outcomes were cognition, receptive and expressive communication, and fine and gross motor development measured with the Bayley-III.ResultsAt one year of age (mean age 13.1 months SD = 0.64), there was a statistically significant effect in the intention-to-treat analysis on receptive communication F(1, 85) = 4.61, p = 0.035, eta 2 = 0.051. No statistically significant effects were found on the other Bayley-III outcome measures. There were no significant differences between the groups regarding gestational age, birth weight, gender, parents' education, or age at assessment.ConclusionThis new intervention indicates a small positive effect on moderate-to-late preterm infants' communication ability at one year of age. Though the attrition rate was relatively large, results are encouraging since clinical interventions supporting moderate-to-late preterm infants and parents are lacking.Trial Registration: NCT02034617

BACKGROUND: There is variability in the use of sedatives and analgesics in neonatal intensive care units (NICUs). We aimed to investigate the use of analgesics and sedatives and the management of neonatal pain and distress.

METHODS: This was a global, prospective, cross-sectional study. A survey was distributed May-November 2022. The primary outcome of this research was to compare results between countries depending on their socio-sanitary level using the sociodemographic index (SDI). We organized results based on geographical location.

RESULTS: The survey collected 1304 responses, but we analyzed 924 responses after database cleaning. Responses from 98 different countries were analyzed. More than 60% of NICUs reported having an analgosedation guideline, and one-third of respondents used neonatal pain scales in more than 80% of neonates. We found differences in the management of sedation and analgesia between NICUs on different continents, but especially between countries with different SDIs. Countries with a higher SDI had greater availability of and adherence to analgosedation guidelines, as well as higher rates of analgosedation for painful or distressing procedures. Countries with different SDIs reported differences in analgosedation for neonatal intubation, invasive ventilation, and therapeutic hypothermia, among others.

CONCLUSIONS: Socio-economic status of countries impacts on neonatal analgosedation management.

IMPACT: There is significant variability in the pain management practices in neonates. There is a lack of knowledge related to how neonatal pain management practices differ between regions. Sociodemographic index is a key factor associated with differences in neonatal pain management practices across global regions.

Problem: The lives of healthy siblings living with a sibling with a long- term condition are often shaped by the family, type of illness, length of illness, age of the child, caregiver demands, and support provided to the family, ill sibling, and healthy sibling. While the experiences of healthy siblings are documented in the literature by parent proxy, literature on healthy siblings self-reported experiences of living with a sibling who has a long-term condition remains scarce. Purpose: This umbrella review aims to synthesize reviews on the self-reported experiences of healthy siblings of children living with a sibling who has a long-term condition. Eligibility criteria: Published peer-reviewed reviews in English language exploring the self-reported experiences of healthy siblings under 24 years old, whose siblings are diagnosed with a long-term condition. Sample: Using a developed search strategy, seven electronic databases (CINAHLPlus, Scopus, PubMed, PsycINFO, Cochrane Database of Systematic Reviews, Clinical Key, and Google Scholar) were searched from 2018 till December 2023. Eleven reviews met the inclusion criteria and were subjected to narrative synthesis. Results: Four themes (adjusting to changes, wanting to help, living the ups and downs, living the changes), and eight subthemes were generated from the syntheses. Conclusion: This is the first umbrella review undertaken on healthy siblings self-reported experiences of living with a sibling who has a long-term condition. The impact of a long-term condition on healthy siblings of children with a long-term condition suggests a need for healthcare providers and organisations to provide better emotional, psychological, and informational support to healthy siblings and their families. Implications: Findings from this review will inform healthcare providers, organisations, researchers, and policymakers on the development of future clinical practices and research for healthy siblings.

Background: There is limited understanding of the concept of the digital identity of young children created through engagement on social networking sites. Objective: The objective of this scoping review was to identify key characteristics of the concept of digital identity for children Methods: This scoping review was conducted using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. The key databases searched were EBSCO, Web of Science, ProQuest ERIC, and Scopus. Gray literature sources (National Grey Literature Collection, ProQuest Dissertations and Theses, and Google Scholar) were also searched to identify unpublished studies. Articles were selected if they were published in English and reported data on the digital identity of children in relation to social networking sites. Results: The key terms used in the literature were sharenting, followed by digital footprints and children's identities. Our study revealed 2 approaches to the creation of digital identity: social digital identity and performative digital identity. The articles in this review most commonly used the term sharenting to describe the behavior parents engage in to create digital identities for children on social networking sites. Motivations to post information about children differed among parents; however, the most common reasons were to share with friends and family and create digital archives of childhood photos, termed social digital identity. The second motivation was categorized as performative digital identity. The risk of digital kidnapping and identity theft associated with the creation of digital identities also influenced parents' behaviors. Conclusions: The creation of a digital identity for children is an emerging concept. Our review develops a deeper understanding of sharenting behaviors that can be used to better support parents and their children in creating a digital identity with children and awareness of the potential future impact. We recommend that future studies explore the perspectives of children as key stakeholders in the creation of their digital identity.

BACKGROUND: Children with long-term conditions are vulnerable due to the treatments required for their conditions. Since the start of the coronavirus disease 2019 (COVID-19) pandemic, Western Australians experienced restrictions that changed daily life activities but were able to return to some of their previous routines due to the restrictions.

AIM: The study explored the stress experiences of parents caring for children with long-term conditions during COVID-19 in Western Australia.

DESIGN AND PARTICIPANTS: The study was codesigned with a parent representative caring for children with long-term conditions to ensure essential questions were targeted. Twelve parents of children with various long-term conditions were recruited. Ten parents completed the qualitative proforma, and two parents were interviewed in November 2020. Interviews were audio-recorded and transcribed verbatim. Data were anonymised and analysed using reflexive thematic analysis.

FINDINGS: Two themes were produced: (1) 'Keep my child safe' describes the children's vulnerabilities due to their long-term conditions, the adjustments parents' made to keep their children safe and the various consequences faced. (2) 'COVID-19's silver lining' covers the positives of the COVID-19 pandemic, including their children having fewer infections, the availability of telehealth appointments, relationship improvements and the parent's hopes for a new normal where behaviours prevent transmission of infectious (e.g., hand sanitising).

CONCLUSION: Western Australia provided a unique context for the COVID-19 pandemic due to no transmission of the virus severe acute respiratory syndrome coronavirus 2 at the time of the study. The tend and befriend theory aids in explaining the parents' stress experiences, and the application highlights a unique aspect of this theory. Parents tended to their children during COVID-19, but many could no longer rely on others for connection, support and respite, and became further isolated in attempting to protect their children due to COVID-19 consequences. The findings highlight that some parents of children with long-term conditions need specific attention during times of pandemics. Further review is recommended to support parents through the impact of COVID-19 and similar crises.

PATIENT OR PUBLIC CONTRIBUTION: This study was codesigned with an experienced parent representative who was part of the research team and involved throughout the research process to ensure meaningful end-user engagement and ensure essential questions and priorities were addressed.