Adapting the Cornell assessment of pediatric delirium for Swedish context: translation, cultural validation and inter-rater reliability.

BACKGROUND: Pediatric delirium causes prolonged hospital stays, increased costs, and distress for children and caregivers. Currently, there is no delirium screening tool available in Sweden that has been translated, culturally validated, and tested for reliability. This study aimed to translate, culturally adapt, and assess the suitability of the Cornell Assessment of Pediatric Delirium (CAPD) for implementation in Swedish healthcare settings. METHODS: The CAPD was translated and culturally adapted to Swedish context following the ten-step process recommended by the International Society for Pharmacoeconomics and Outcomes Task Force for Translation and Cultural Adaptation. The Swedish CAPD was tested in the pediatric intensive care unit of Uppsala University Hospital, a tertiary hospital in Sweden. Inter-rater reliability was tested using intraclass correlation coefficient (ICC), with both Registered Nurses (RNs) and Assistant Nurses (ANs) conducting parallel measurements using the Swedish CAPD. A reliability score of ICC > 0.75 was considered indicative of good reliability. RESULTS: After translation of the CAPD into Swedish, 10 RNs participated in the cultural adaptation process. Issues related to word choice, education, and instructions were addressed. Wording improvements were made to ensure accurate interpretation. Supplementary training sessions were organized to strengthen users' proficiency with the Swedish CAPD. Additional instructions were provided to enhance clarity and usability. Inter-rater reliability testing resulted in an ICC of 0.857 (95% CI: 0.708-0.930), indicating good reliability. CONCLUSION: This study successfully translated and culturally adapted the CAPD to align with Swedish contextual parameters. The resulting Swedish CAPD demonstrated good inter-rater reliability, establishing its viability as a tool for measuring delirium among pediatric patients in Swedish pediatric intensive care units. TRAIL REGISTRATION: Not applicable.

Early skin-to-skin contact and the risk of intraventricular haemorrhage and sepsis in preterm infants.

AIM: This study aimed to investigate the risks of intraventricular haemorrhage (IVH) or sepsis in extremely and very preterm infants exposed to early skin-to-skin contact (SSC). METHODS: Data from the Swedish Neonatal Quality Register from 2015 to 2021 were extracted to compare the proportions of infants exposed and not exposed to SSC on day 0 and/or 1 in life that developed IVH or sepsis. RESULTS: A total of 2514 infants, 1005 extremely preterm and 1509 very preterm, were included. This amounted to 69% of all extremely and very preterm infants born during the study period. The proportion of infants with IVH exposed and not exposed to early SSC was 11% and 27%, an adjusted odds ratio (aOR) of 0.67 (95%CI 0.52-0.86, p = 0.002). The proportion of infants with sepsis exposed and not exposed to early SSC was 16% and 30%, an aOR of 0.94 (95%CI 0.75-1.2, p = 0.60). For extremely preterm infants, the proportion with sepsis when exposed and not exposed to early SSC was 29% and 44%, an aOR of 0.65 (95%CI 0.46-0.92, p = 0.015). CONCLUSION: In the current setting, the risk of IVH or sepsis is not increased when an extremely or very preterm infant is exposed to early SSC.

Parental Experiences of Neonatal Care: A Nationwide Study on Determinants of Excellence.

INTRODUCTION: Infant- and family-centered developmental care can reduce adverse outcomes in both infants and parents. Parents' experiences of the care and staff treatment remain to be evaluated. METHODS: Parents of infants admitted to neonatal units in Sweden from July 2020 to May 2022 responded to a questionnaire with standardized questions about in-hospital care. Exposures were hospital, gestational age, length of hospital stay, unit level, and bed density. The proportions of parents rating aspects of neonatal care as excellent, defined as five on a Likert scale, and the determinants of excellence were described. The results were benchmarked with ratings in adult somatic care. RESULTS: A total of 4,475/13,108 (34%) parents responded. The ratings of excellent care varied by question from 65% to 90%. The largest variation in excellence between neonatal units (range 43-80%) was found for "participation and involvement." The proportion of excellence was significantly lower among parents of extremely preterm infants. Confidence in the staff was lower in parents of extremely preterm infants than in parents of term infants (56% vs. 83%). Longer hospital stays affected the experience of neonatal care adversely, whereas level of care and bed density were overall unrelated to the parental experience. Parents in neonatal care rated the care as excellent to a higher extent than patients cared for in adult medicine. CONCLUSION: A majority of parents rated neonatal care in Sweden as excellent. The less frequent ratings of excellence among parents of extremely preterm infants indicate that more could be done to optimize parental involvement and support.

Nordic survey showed wide variation in discharge practices for very preterm infants.

AIM: We aimed to describe clinical practices and criteria for discharge of very preterm infants in Nordic neonatal units. METHODS: Medical directors of all 89 level-2 and level-3 units in Denmark, Finland, Iceland, Norway and Sweden were invited by e-mail to complete a web-based multiple-choice survey with the option to make additional free-text comments. RESULTS: We received responses from 83/89 units (93%). In all responding units, discharge readiness was based mainly on clinical assessment with varying criteria. In addition, 36% used formal tests of cardiorespiratory stability and 59% used criteria related to infant weight or growth. For discharge with feeding tube, parental ability to speak the national language or English was mandatory in 45% of units, with large variation among countries. Post-discharge home visits and video-consultations were provided by 59% and 51%, respectively. In 54% of units, parental preparation for discharge were not initiated until the last two weeks of hospital stay. CONCLUSION: Discharge readiness was based mainly on clinical assessment, with criteria varying among units despite similar population characteristics and care structures. This variation indicates a lack of evidence base and may unnecessarily delay discharge; further studies of this matter are needed. Earlier parental preparation and use of interpreters might facilitate earlier discharge.

Improving NICU staff decision-making with parents in medical rounds: a pilot study of reflective group dialogue intervention.

Introduction: The communication skills of healthcare professionals play a crucial role in successful shared decision-making with parents in neonatal intensive care. Improving communication skills can be achieved through practice and reflection on personal experiences after authentic interaction events with parents. The process of reflection typically involves three phases: description, reflection, and critical reflection. In this study, our aim was to explore the acceptability of the Reflective Group Dialogue intervention and its effectiveness in supporting the reflective process. Methods: This qualitative pilot study was conducted in the neonatal intensive care unit at Uppsala University Children's Hospital, Sweden. The sample consisted of nine medical rounds with seven families, five neonatologists, seven registered nurses, and five assistant nurses. Purposive sampling was used to collect the data. The intervention comprised four elements: (1) before the intervention, a recorded presentation on shared decision-making was given to the entire unit staff, (2) an observation of a normal medical round discussion with parents, (3) an interview with parents about their experience after the same round, and (4) a reflective discussion with the participating health care professionals after the round. The parent interviews and reflective discussions were audio-recorded and transcribed verbatim. They were analyzed using thematic analysis as a theoretical strategy. Results: Both parents and staff widely accepted the intervention and found it beneficial. We identified four discussions that remained in the descriptive phase of the reflection process, four that reached the reflective phase, and one that reached the critical reflection phase. The descriptive discussions were characterized by using a single perspective to reflect, often based on personal opinions. The reflective discussions included analyzing interaction sequences from both staff and parent perspectives and were primarily based on actual observations of communication during medical rounds. The critical discussion led to a new awareness of current practices concerning parental involvement in decision-making. These discussions also utilized "what-if" thinking to evaluate potential new practices and their pros and cons. Conclusions: The intervention seems promising as it was perceived as beneficial by the recipients and facilitated reflection in most cases. However, to enhance the feasibility of the intervention, some improvements are discussed.

Neonatal Resuscitation: A Critical Incident Technique Study Exploring Pediatric Registered Nurses' Experiences and Actions.

BACKGROUND: Teamwork during neonatal resuscitation is essential. Situations arise quickly and unexpectedly and are highly stressful, requiring pediatric registered nurses (pRN) to respond effectively and in a structured manner. In Sweden, pRNs work in all pediatric settings including the neonatal intensive care unit. The experience and actions of pRNs are seldom explored, and studies within this area could develop and improve strategies for neonatal resuscitation situations. PURPOSE: To describe pRNs' experiences and actions during neonatal resuscitation. METHODS: A qualitative interview study based on the critical incident technique was performed. Sixteen pRNs from 4 neonatal intensive care units in Sweden were interviewed. RESULTS: Critical situations were divided into 306 experiences and 271 actions. pRNs' experiences were divided into 2 categories: individual- and team-focused experiences. Critical situations were managed by individual- or team-focused actions.Experiences revealed were variation of alarms, psychological impact, parental presence, structured working methods, the team's interactions, professional experience and resource availability, and the impact of the environment. Actions revealed were being prepared, managing the psychological impact, adopting a professional attitude toward parents, working in a structured way, and competence/resource reinforcement. IMPLICATIONS FOR PRACTICE: Developing a structured role distribution within the neonatal resuscitation program and ensuring clear communication in the team during simulation training and in intense situations can increase pRNs' feeling of safety and allow them to further develop their professional role in neonatal resuscitation situations.

To Feel Abandoned in an Insecure Situation: Parents' Experiences of Separation From Their Newborn Due to the Mother Being COVID-19 Positive.

BACKGROUND: The COVID-19 pandemic resulted in changes in neonatal care, sometimes resulting in a separation between parents and their newborn. Knowledge about parents' experiences of this separation is limited. PURPOSE: To explore parents' experiences of separation from their newborn due to COVID-19. METHODS: Interviews with parents (n = 11) separated from their newborn. RESULTS: The parents' experiences of being separated from their newborn were expressed under 3 themes: "To create a sense of safety in an insecure situation"; "Unexpected start to parenthood"; and "To be reunited." Parents felt abandoned and alone, even if they had support from significant others. Although they considered the separation as undesired, wanting to be with their newborn infant, it was secondary to not wanting to infect the infant with COVID-19. Furthermore, lacking information about a potentially lethal virus adds to the uncertainty that comes with having a newborn. The separation affected the whole family, some for a long time afterward. IMPLICATIONS FOR PRACTICE AND RESEARCH: If a new situation with potentially life-threatening effects, like the COVID-19 pandemic, occurs again, considering the experiences of these parents is paramount. Precautions should be taken to minimize the potential harm. If a separation between newborns and parents is inevitable, parents need preparation and transparent information prior to the separation and before the reunion. Well-thought-out policies must be in place to minimize the impact of a separation on both parties. Parents should be able to have a deputy parent present during an undesired but necessary separation from their newborn.

Exploring caregivers' experiences of Kangaroo Mother Care in Bangladesh: A descriptive qualitative study.

BACKGROUND: Kangaroo Mother Care (KMC) is an evidence-based intervention recommended by the World Health Organization (WHO) to reduce preterm mortality and morbidity. The aim of this study was to explore caregivers' experiences of providing KMC in hospital settings and after continuation at home in Bangladesh in order to assess enablers and barriers to optimal implementation. METHODS: Interviews with fifteen caregivers were conducted using an interview guide with semi-structured questions in August 2019 and March 2020. Convenience sampling was used to select hospitals and participants for the study. The inclusion criteria were being a caregiver currently performing KMC in the hospital or having been discharged one week earlier from the KMC ward. The interviews were audio recorded, transcribed verbatim, and translated. The data were analyzed using thematic analysis with an inductive approach. RESULTS: Three themes were identified as regards the caregivers' experiences of providing KMC: conducive conditions, an empowering process, and suboptimal implementation. The results showed that there are supporting circumstances for caregivers performing KMC in Bangladesh, including social support structures and positive attitudes to the method of care. It also appeared that the caregivers felt strengthened in their roles as caregivers by learning and performing KMC. However, the implementation of KMC was suboptimal due to late initiation of KMC, difficulties with keeping the baby skin-to-skin, and pain after cesarean section hampering skin-to-skin practice. CONCLUSIONS: The social and cultural conditions for the caregivers to perform KMC as well as the empowerment the parents felt in their roles as caregivers when performing KMC are facilitating factors for this method of care. Initial separation and late initiation of KMC, as well as disregard for the mothers' needs for care and support, were barriers to optimal practice leading to missed opportunities. These facilitators and barriers need to be addressed in order to succeed in scaling up the national KMC program.

Pharmacological interventions for pain and sedation management in newborn infants undergoing therapeutic hypothermia.

BACKGROUND: Newborn infants affected by hypoxic-ischemic encephalopathy (HIE) undergo therapeutic hypothermia. As this treatment seems to be associated with pain, and intensive and invasive care is needed, pharmacological interventions are often used. Moreover, painful procedures in the newborn period can affect pain responses later in life, impair brain development, and possibly have a long-term negative impact on neurodevelopment and quality of life. OBJECTIVES: To determine the effects of pharmacological interventions for pain and sedation management in newborn infants undergoing therapeutic hypothermia. Primary outcomes were analgesia and sedation, and all-cause mortality to discharge. SEARCH METHODS: We searched CENTRAL, PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), and the trial register ISRCTN in August 2021. We also checked the reference lists of relevant articles to identify additional studies. SELECTION CRITERIA: We included randomized controlled trials (RCT), quasi-RCTs and cluster-randomized trials comparing drugs used for the management of pain or sedation, or both, during therapeutic hypothermia: any opioids (e.g. morphine, fentanyl), alpha-2 agonists (e.g. clonidine, dexmedetomidine), N-Methyl-D-aspartate (NMDA) receptor antagonist (e.g. ketamine), other analgesics (e.g. paracetamol), and sedatives (e.g. benzodiazepines such as midazolam) versus another drug, placebo, no intervention, or non-pharmacological interventions.  Primary outcomes were analgesia and sedation, and all-cause mortality to discharge. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed studies identified by the search strategy for inclusion. We planned to use the GRADE approach to assess the certainty of evidence. We planned to assess the methodological quality of included trials using Cochrane Effective Practice and Organisation of Care Group (EPOC) criteria (assessing randomization, blinding, loss to follow-up, and handling of outcome data). We planned to evaluate treatment effects using a fixed-effect model with risk ratio (RR) for categorical data and mean, standard deviation (SD), and mean difference (MD) for continuous data.  MAIN RESULTS: We did not find any completed studies for inclusion. Amongst the four excluded studies, topiramate and atropine were used in two and one trial, respectively; one study used dexmedetomidine and was initially reported in 2019 to be a randomized trial. However, it was an observational study (correction in 2021). We identified one ongoing study comparing dexmedetomidine to morphine. AUTHORS' CONCLUSIONS: We found no studies that met our inclusion criteria and hence there is no evidence to recommend or refute the use of pharmacological interventions for pain and sedation management in newborn infants undergoing therapeutic hypothermia.

The Swedish approach to nurturing extremely preterm infants and their families: A nursing perspective.

Nurturing extremely premature infants is a complicated task that not only necessitates a systematic approach to the immature physiology and its medical management, but also to the needs of the family. Infants born at 22-24 weeks require many weeks of intensive care including a long duration of mechanical ventilation, numerous stressful medical interventions, and for the parents to spend a lot of time in the Neonatal Intensive Care unit (NICU). This paper aims to outline the Swedish nursing approach to nurturing these infants and their families. The nursing care is structured so the parents are the primary caregivers supported by the staff and is based on: timely expression and provision of mother's own breast milk, early and prolonged skin-to-skin contact and close collaboration with the family. While this presentation is based on a single-center's experience, it well represents the general features of nursing provided to extremely preterm infants in Swedish NICUs.

When all I wanted was to hold my baby-The experiences of parents of infants who received therapeutic hypothermia.

AIM: The knowledge is limited about how parents experience the time when their infant is receiving therapeutic hypothermia (TH) after severe perinatal asphyxia. The aim of this study was to explore parents' experience of closeness and involvement in their infant's care while in the neonatal intensive care unit (NICU) with their newborn undergoing TH. METHODS: Face-to-face, semi-structured interviews were conducted with parents (n = 11) whose infants (n = 8, aged 3-5 years at the time of the study) underwent TH at a level III Swedish NICU during 2013-2016. The interviews were analysed using qualitative content analysis. RESULTS: All the parents shared the trauma of being both physically and psychologically separated from their infant. They all described a need for information and emotional support, and reported that the NICU staff had influenced the extent to which they as parents had been able to be near and actively participate in the care. Parents described the wish to be closer to their infant and to be more actively involved in their infant's care. CONCLUSION: Strategies to enable parent-infant closeness and active guidance from staff might help alleviate the emotional stress of parents and promote their participation during TH.

External barriers for including parents of preterm infants in a randomised clinical trial in the neonatal intensive care unit in Sweden: a descriptive study.

OBJECTIVES: Performing randomised controlled trials (RCTs) in neonatal intensive care is challenging in many ways. While restrictive inclusion criteria or busy study protocols are obvious barriers, external barriers leading to termination of a study are seldom discussed. The aim of this study was to describe barriers for inclusion of families in neonatal intensive care in an RCT aiming to evaluate the effects of continuous skin-to-skin contact on mood and sleep quality in parents of preterm infants, as well as the quality of parent-infant interaction and salivary cortisol concentrations at the time of discharge. DESIGN: A descriptive study. SETTING: Three out of seven tertiary neonatal intensive care units in Sweden participated in a two-arm RCT that was terminated because of low inclusion rate. PARTICIPANTS: Before termination of the study, 11 out of 242 families assessed for eligibility were included for participation. RESULTS: The major barriers for inclusion in this RCT were external due to (1) lack of intensive care beds in the neonatal ward, causing medically stable infants to be transferred back to the referring hospital quicker than expected, (2) moving directly from the delivery room to a family room without passing an open bay intensive care room or (3) transferring from one neonatal ward to another with the same care level to increase availability of intensive care beds where needed. Other barriers were the inclusion criteria 'single-birth' and 'Swedish-speaking parent'. CONCLUSIONS: The major barriers for including participants were external constituted by transferals between neonatal wards and cities due to lack of intensive care beds. This is a multifactorial issue related to organisational structures. However, since this affects the possibilities to perform research this study highlights some suggestions to consider when planning prospective intervention studies within a neonatal setting. TRIAL REGISTRATION NUMBER: NCT03004677.

Study protocol: parents as pain management in Swedish neonatal care - SWEpap, a multi-center randomized controlled trial.

BACKGROUND: During the first period of life, critically ill as well as healthy newborn infants experience recurrent painful procedures. Parents are a valuable but often overlooked resource in procedural pain management in newborns. Interventions to improve parents' knowledge and involvement in infants' pain management are essential to implement in the care of the newborn infant. Neonatal pain research has studied a range of non-pharmacological pain alleviating strategies during painful procedures, yet, regarding combined multisensorial parent-driven non-pharmacological pain management, research is still lacking. METHODS/DESIGN: A multi-center randomized controlled trial (RCT) with three parallel groups with the allocation ratio 1:1:1 is planned. The RCT "Parents as pain management in Swedish neonatal care - SWEpap", will investigate the efficacy of combined pain management with skin-to-skin contact, breastfeeding and live parental lullaby singing compared with standard pain care initiated by health care professionals, during routine metabolic screening of newborn infants (PKU-test). DISCUSSION: Parental involvement in neonatal pain management enables a range of comforting parental interventions such as skin-to-skin contact, breastfeeding, rocking and soothing vocalizations. To date, few studies have been published examining the efficacy of combined multisensorial parent-driven interventions. So far, research shows that the use of combined parent-driven pain management such as skin-to-skin contact and breastfeeding, is more effective in reducing behavioral responses to pain in infants, than using the pain-relieving interventions alone. Combined parental soothing behaviors that provide rhythmic (holding/rocking/vocalizing) or orogustatory/orotactile (feeding/pacifying) stimulation that keep the parent close to the infant, are more effective in a painful context. In the SWEpap study we also include parental live lullaby singing, which is an unexplored but promising biopsychosocial, multimodal and multisensory pain alleviating adjuvant, especially in combination with skin-to-skin contact and breastfeeding. TRIAL REGISTRATION: ClinicalTrials.gov ( NCT04341194 ) 10 April 2020.

Parents experiences of feeding their extremely preterm children during the first 2-3 years - A qualitative study.

AIM: To describe parents of extremely preterm children experiences regarding feeding of their children during the first 3 years of the child's life. METHODS: This is a qualitative study involving interviews conducted with 12 parents of nine children who had been cared for at one neonatal intensive care unit in Sweden. The interviews were conducted between May and September 2018; the data were analysed using qualitative content analysis. RESULTS: All parents experienced some difficulties with their child's eating development and described feeding their child as sometimes both difficult and frustrating. Variation in when these difficulties arose made it hard for the parents to obtain the individual support they wanted and needed. Parents experienced a need for more support - from both staff members and parents with similar experiences - during and after their child's stay at the NICU. CONCLUSION: All parents participating in the study experienced difficulties during some phase of their child's feeding development. They expressed the need for more specialised support both during and after their child's time at the hospital.

Parents experiences of discharge readiness from a Swedish neonatal intensive care unit.

AIM: The aim of this study was to describe how parents experienced the support at, and preparation for discharge from, the NICU and how they experienced the first time at home. DESIGN: A qualitative design with quantitative elements was applied. METHODS: A questionnaire study. Data were analysed using qualitative content analysis with quantitative elements. RESULTS: The majority of included parents felt adequately prepared for going home and sufficiently supported during the first period home. Negative experiences were related to lack of time for preparation, lack of support and information, especially about the infant's food intake, breastfeeding, and tube feeding, and lack of follow-up counselling post discharge. This study supports that parents who are closely involved in their infant's care at the NICU, and who stay with the infant at the NICU around the clock, are well prepared for the transition to home.

Skin-to-skin contact is associated with earlier breastfeeding attainment in preterm infants.

AIM: This study investigated the effects of skin-to-skin contact on breastfeeding attainment, duration and infant growth in preterm infants, as this has not been sufficiently explored. METHODS: A prospective longitudinal study on Kangaroo mother care was carried out, comprising 104 infants with a gestational age of 28 + 0 to 33 + 6 and followed up to one year of corrected age. Parents and staff recorded the duration of skin-to skin contact during the stay in the neonatal intensive care unit (NICU). Medical data were collected through patient records, and follow-up questionnaires were filled in by parents. RESULTS: The 53 infants who attained full breastfeeding in the NICU did so at a median (range) of 35 + 0 (32 + 1 to 37 + 5) weeks of postmenstrual age, and skin-to-skin contact was the only factor that influenced earlier attainment in the regression analysis (R(2) 0.215 p < 0.001). The daily duration of skin-to-skin contact during the stay in the NICU did not affect the duration of breastfeeding or infant growth after discharge. Furthermore, infant growth was not affected by the feeding strategy of exclusive, partial breastfeeding or no breastfeeding. CONCLUSION: A longer daily duration of skin-to-skin contact in the NICU was associated with earlier attainment of exclusive breastfeeding.

First-time events between parents and preterm infants are affected by the designs and routines of neonatal intensive care units.

AIM: Early parental bonding with preterm babies is particularly important, and the aim of our study was to explore when parents experienced what they regarded as important events for the first time while their infant was in the neonatal intensive care unit (NICU). METHODS: The study was part of a longitudinal project on Kangaroo Mother Care at two Swedish university hospitals. The parents of 81 infants completed questionnaires during their infants' hospital stay. RESULTS: Most parents saw and touched their infants immediately after birth, but only a few could hold them skin to skin or swaddle them. Other important events identified by parents included the first time they performed care giving activities and did so independently, interaction and closeness with the infant, signs of the infant's recovery and integration into the family. The timing of the events depended on the physical design of the NICU, whether parents' could stay with their infant round-the-clock and when they were allowed to provide care under supervision and on their own. CONCLUSION: The design and routines of the NICU dictated when parents first interacted with their infants. Clinical guidelines that facilitate early contact with preterm babies can help parents to make the transition to their parental role.