Effects of parent-provider communication during infant hospitalization in the NICU on parents: A systematic review with meta-synthesis and narrative synthesis

ObjectiveTo synthesize and analyse the literature on the effects of parent-provider communication during infant hospitalization in the neonatal (intensive) care unit (NICU) on parent-related outcomes.MethodsSystematic review with meta-synthesis and narrative synthesis. Databases (PubMed, PsycINFO, Cochrane Library, CINAHL, Web of Science, Scopus) were searched in October/November 2019. Studies reporting, observing, or measuring parent-related effects of parent-provider communication in the NICU were included. Study quality was assessed using the Quality Assessment Tool for Studies with Diverse Designs. Qualitative studies were meta-synthesized using deductive and inductive thematic analysis. Quantitative studies were analysed using narrative synthesis.Results5586 records were identified; 77 were included, reporting on N = 6960 parents, N = 693 providers, and N = 300 NICUs. Analyses revealed five main (positive and negative) effects of parent-provider interaction on parents’ (1) coping, (2) knowledge, (3) participation, (4) parenting, and (5) satisfaction. Communication interventions appeared impactful, particularly in reducing parental stress and anxiety. Findings confirm and refine the NICU Communication Framework.ConclusionsParent-provider communication is a crucial determinant for parental well-being and satisfaction with care, during and following infant hospitalization in the NICU.R. Practice Implications: Providers should particularly consider the impact on parents of their day-to-day interaction – the most occurring form of communication of all.     

Parent needs assessment instruments in neonatal intensive care units: Implications for parent education interventions

ObjectivesPsychosocial and educational interventions based on standardized needs assessment can help alleviate distress among parents of premature infants. This study aims to (1) provide an overview of standardized instruments used to assess parental needs in neonatal intensive care units (NICUs) and (2) discuss their potential to facilitate the provision of appropriate support to parents of premature babies.MethodsA systematic literature review was conducted. PubMed, CiNAHL, PsychARTICLES, PsychINFO, and Medline were searched for studies reporting on the use of validated parental needs assessment instruments in the NICU.ResultsFollowing the analysis of 33 publications, 6 instruments designed to assess the needs of premature infants’ parents were identified. Based on their good psychometric properties and practicality, the NICU Family Needs Inventory, the Critical Care Maternal Needs Inventory, and the Nurse Parent Support Tool were considered particularly relevant for use in clinical and research settings.ConclusionsValidated parent needs assessment instruments are available for use in the NICU setting. Further research evaluating the benefits and usability of standardized parental needs assessment in the NICU is needed.Practice implicationsValidated needs assessment instruments should be consistently used to facilitate the development of targeted psychosocial and educational interventions for parents in the NICU.     

Parents’ needs and perceived gaps in communication with healthcare professionals in the neonatal (intensive) care unit: A qualitative interview study

ObjectiveTo explore parents’ needs and perceived gaps concerning communication with healthcare professionals during their preterm infants’ admission to the neonatal (intensive) care unit (NICU) after birth.MethodsSemi-structured, retrospective interviews with 20 parents of preterm infants (March 2020), admitted to a Dutch NICU (level 2–4) minimally one week, one to five years prior. The interview guide was developed using Epstein and Street’s Framework for Patient-Centered Communication. Online interviews were audio-taped and transcribed verbatim. Deductive and inductive thematic analysis was performed by two independent coders.ResultsCommunication needs and gaps emerged across four main functions of NICU communication: Building/maintaining relationships, exchanging information, (sharing) decision-making, and enabling parent self-management. Communication gaps included: lack of supportive physician communication, disregard of parents’ views and agreements, missing communication about decisions, and the absence of written (discharge) information.ConclusionThis study improves our understanding and conceptualization of adequate NICU communication by revealing persisting gaps in parent-provider interaction. Also, this study provides a steppingstone for further integration of parents as equal partners in neonatal care and communication.Practice implicationsThe results are relevant to practitioners in the field of neonatal and pediatric care, providing suggestions for tangible improvements in NICU care in the Netherlands and beyond.     

Barriers and facilitators to shared decision-making in neonatal medicine: A systematic review and thematic synthesis of parental perceptions

ObjectivesSystematically review parental perceptions of shared decision-making (SDM) in neonatology, identifying barriers and facilitators to implementation.MethodsElectronic database (Medline, PsycINFO, CINAHL and Scopus) and follow-up searches were conducted to identify qualitative studies. Data were extracted, thematically analysed and synthesised.ResultsSearches yielded 2445 papers, of which 25 were included. Thematic analysis identified six key themes. Key barriers included emotional crises experienced in the NICU setting, lack of medical information provided to parents to inform decision-making, inadequate communication of information, poor relationships with caregivers, lack of continuity in care, and perceived power imbalances between HCPs and parents. Key facilitators included clear, honest and compassionate communication of medical information, caring and empathetic caregivers, continuity in care, and tailored approaches that reflected parent’s desired level of involvement.ConclusionThe highly specialised environment, and the emotional crises experienced by parents impact significantly on their perceived capacity to engage in surrogate decision-making.Practice ImplicationsComplex and multi-factorial interventions that address the training needs of HCPs, and the emotional, informational and decision support needs of parents are needed. SDM skills training, improved information delivery, and integrated emotional and decisional support could help parents to become more involved in SDM for their infant.     

The functions of adequate communication in the neonatal care unit: A systematic review and meta-synthesis of qualitative research

ObjectiveTo assess the main functions of parent-provider communication in the neonatal (intensive) care unit (NICU) and determine what adequate communication entails according to both parents and health professionals.MethodsA systematic review and meta-synthesis of qualitative research. PubMed, Ebsco/PsycINFO, Wiley/Cochrane Library, Ebsco/CINAHL, Clarivate Analytics/Web of Science Core Collection, and Elsevier/Scopus were searched in October-November 2019 for records on interpersonal communication between parents and providers in neonatal care. Title/abstract screening and full-text analysis were conducted by multiple, independent coders. Data from included articles were analyzed using deductive and inductive thematic analysis.Results43 records were included. Thematic analysis of data resulted in the development of the NICU Communication Framework, including four functions of communication (1. building/maintaining relationships, 2. exchanging information, 3. (sharing) decision-making, 4. enabling parent self-management) and five factors that contribute to adequate communication across these functions (topic, aims, location, route, design) and, thereby, to tailored parent-provider communication.ConclusionThe NICU Communication Framework fits with the goals of Family Integrated Care to encourage parent participation in infants’ care. This framework forms a first step towards the conceptualization of (adequate) communication in NICU settings.Practice implicationsFindings can be used to improve NICU communication in practice, in particular through the mnemonic TAILORED.     

Developing an audio-based communication tool for NICU discharge of Latino families with limited English proficiency

ObjectiveResearch shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL.MethodsFocus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability.ResultsProvider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families.ConclusionOur QPL may address challenges faced by Latino parents LEP when transitioning home.Practice implicationsQPLs may improve Latino NICU infants’ healthcare outcomes.     

Proactive Planning for Vascular Access Therapy: One Hospital's Plan for Success

BackgroundVascular access is a critical component of care for patients in neonatal intensive care units (NICUs). Our NICU had only a small number of nurses cross-trained to perform peripherally inserted central catheter (PICC) insertions and was not able to provide coverage 24 hours a day, 7 days a week. We combined the vascular access team (VAT) and NICU PICC team to improve the timeliness of NICU PICC insertions, standardize care, and use ultrasound for all PICC placements.MethodsA paper guide tool was developed to prioritize PICC placements as emergent, same-day, or nonemergent. NICU nurses were trained to insert PICCs using ultrasound. Catheter insertion and care processes were standardized for the new centralized PICC team. NICU and VAT staff worked together to improve daily communication, hand-offs, and referrals. Criteria were developed to determine the appropriate hospital location for PICC insertions. Charge nurses began capturing information about patients with PICCs on daily planning sheets.ResultsFollowing implementation of the new combined VAT, the average wait time for emergent and same-day insertions decreased 10%. No adverse events were reported due to a delay in PICC placement or the PICC referral process.ConclusionsCombining the NICU PICC insertion nurses and the VAT into a new centralized PICC team provided an opportunity for growth in both areas. NICU PICCs are now placed efficiently based on patient acuity and referral prioritization throughout the hospital. NICU and VAT physicians and nurses have developed a strong partnership for the provision of PICC services for NICU patients.     

Acute stress disorder among parents of infants in the neonatal intensive care nursery

The authors examined the prevalence of acute stress disorder (ASD) in parents of infants hospitalized in the neonatal intensive care unit (NICU). Forty parents were assessed after the birth of their infants. Parents completed self-report measures of ASD, parental stress, family environment, and coping style: 28% of parents developed symptoms of ASD. ASD was associated with female gender, alteration in parental role, family cohesiveness, and emotional restraint. Family environment and parental coping style are significantly associated with the development of trauma symptoms. Results from this study suggest potential interventions to help minimize psychological distress in parents.     

Genetic disorders and mortality in infancy and early childhood: delayed diagnoses and missed opportunities

PurposeInfants admitted to a level IV neonatal intensive care unit (NICU) who do not survive early childhood are a population that is probably enriched for rare genetic disease; we therefore characterized their genetic diagnostic evaluation.MethodsThis is a retrospective analysis of infants admitted to our NICU between 1 January 2011 and 31 December 2015 who were deceased at the time of records review, with age at death less than 5 years.ResultsA total of 2,670 infants were admitted; 170 later died. One hundred six of 170 (62%) had an evaluation for a genetic or metabolic disorder. Forty-seven of 170 (28%) had laboratory-confirmed genetic diagnoses, although 14/47 (30%) diagnoses were made postmortem. Infants evaluated for a genetic disorder spent more time in the NICU (median 13.5 vs. 5.0 days; p = 0.003), were older at death (median 92.0 vs. 17.5 days; p < 0.001), and had similarly high rates of redirection of care (86% vs. 79%; p = 0.28).ConclusionGenetic disorders were suspected in many infants but found in a minority. Approximately one-third of diagnosed infants died before a laboratory-confirmed genetic diagnosis was made. This highlights the need to improve genetic diagnostic evaluation in the NICU, particularly to support end-of-life decision making.     

Information needs of parents of children admitted to a neonatal intensive care unit: A review of the literature (1990–2008)

Objective

This literature review focuses on information and communication needs of parents of children admitted to the NICU and on their use of information sources in the illness trajectories at NICU.

Methods

Literature search in 4 electronic databases (Ovid Medline, PsycINFO, CINAHL and Sociological Abstracts), covering 1990–March 2008.

Results

The seventy-eight included articles revealed that NICU parents have high information needs. The illness trajectory mediates parental information needs and induces a changing pattern in information use and information needs. Most attention is paid to the prenatal and acute phases, while information behaviour in sudden events and later phases receives limited attention.

Conclusions

In-depth studies on information needs and corresponding use of information sources are lacking. More longitudinal studies are needed, taking the illness trajectory into account and investigating the determinants and outcomes of the information and communication needs of NICU parents.

Practice implications

Healthcare professionals should adapt their information provision along the illness trajectory. The development of guidelines of information provision during the illness trajectory at NICU would support all professionals.     

What parents want to know about caring for their preterm infant: A longitudinal descriptive study

ObjectivesTo describe the characteristics of parent knowledge needs and skill acquisition over the course of their infant’s neonatal intensive care unit hospitalization.Methods148 parents/guardians of infants ≤33 week gestation enrolled during the usual care phase of a multi-site quasi-experimental study, completing weekly surveys about their learning needs for the coming week and skills learned in the past week.ResultsThe topics of most interest or concern for parents included feeding their infant and their infant’s medical course. Knowledge needs varied by phase of hospitalization (early, middle, late) and by parent age, prior parenting experience, infant gestational age and hospital length of stay. The most common skills learned related to feeding and basic infant care. The number of skills parents reported learning each week varied by parent age, gender, and education.ConclusionsParents of preterm infants expressed specific learning needs and acquisition of skills that varied over the course of the hospitalization and by parent and infant characteristics.Practice implicationsThe findings can be used to improve parent learning experiences so that they can become full partners in their infant’s caregiving and are better prepared to care for their infant after discharge.Study registrationClinicalTrials.gov, ID NCT03418870.     

Communication methods between outpatients with limited-English proficiency and ancillary staff: LASI study results

ObjectiveDescribe communication methods between primary care ancillary staff, including front desk administrative staff and medical assistants (MAs), and patients with limited-English proficiency (LEP).MethodsPatients with LEP completed a telephone survey after a primary care visit including questions about communication with ancillary staff (n = 1029).To inform practice improvements and lend qualitative perspective to these quantitative data, we subsequently conducted semi-structured interviews with ancillary staff and physicians.ResultsProfessional interpreter use was minimal with ancillary staff (<4%). Among patients who did not use their preferred language with bilingual staff, about one-third reported using English to communicate, despite most (≥ 80%) speaking English ‘not well’ or ‘not at all.’ In semi-structured interviews, ancillary staff felt basic English sufficient for most patient communication. However, physicians reported taking on extra visit tasks to compensate for the communication barriers between ancillary staff and patients with LEP.ConclusionsUse of professional interpretation by front desk staff and MAs was minimal. This led many patients with LEP to ‘get by’ with limited English when communicating with ancillary staff, in turn increasing burden on the physician visit.Practice implicationsFuture interventions should focus on increasing use of professional interpretation by outpatient ancillary staff when communicating with LEP patients.     

Role of parental atopy in cow's milk allergy: a population-based study

BackgroundA family history of atopy has been considered an independent risk factor for atopic diseases in children.ObjectiveTo relate the risk of an infant developing IgE-mediated cow's milk allergy (IgE-CMA) to the atopic status of parents.MethodsAssessment of the parental atopic status of children with IgE-CMA (n = 66) previously identified in a large-scale prospective study was compared with the parental atopic status of a control group of healthy infants (n = 156). The atopic status was identified both by self-reporting and skin prick tests (SPTs).ResultsAnalysis for the risk for infants to develop IgE-CMA depended on the assessment method used. No significant differences were noted in self-reported parental atopic status between the IgE-CMA patients and the control group. However, among the subgroup of infants with persistent IgE-CMA (n = 25), maternal but not paternal self-reporting for atopy was more likely compared with parents of the control group (P = .04). In contrast, when analyzed by SPT, in both this persistent subgroup and the total allergic cohort, no significant differences were noted whether analyzed by single parent or both parents and whether the parent tested singly or multiply positive on the SPT.ConclusionIn families with children with persistent IgE-CMA, self-reporting of atopy by parents may be biased. Furthermore, the demonstration of IgE-mediated responses to allergens in parents is insufficient by itself, in a general population cohort, to predict which infants are at greatest risk of developing IgE-CMA.     

Automatic generation of natural language nursing shift summaries in neonatal intensive care: BT-Nurse

IntroductionOur objective was to determine whether and how a computer system could automatically generate helpful natural language nursing shift summaries solely from an electronic patient record system, in a neonatal intensive care unit (NICU).MethodsA system was developed which automatically generates partial NICU shift summaries (for the respiratory and cardiovascular systems), using data-to-text technology. It was evaluated for 2 months in the NICU at the Royal Infirmary of Edinburgh, under supervision.ResultsIn an on-ward evaluation, a substantial majority of the summaries was found by outgoing and incoming nurses to be understandable (90%), and a majority was found to be accurate (70%), and helpful (59%). The evaluation also served to identify some outstanding issues, especially with regard to extra content the nurses wanted to see in the computer-generated summaries.ConclusionsIt is technically possible automatically to generate limited natural language NICU shift summaries from an electronic patient record. However, it proved difficult to handle electronic data that was intended primarily for display to the medical staff, and considerable engineering effort would be required to create a deployable system from our proof-of-concept software.     

Prenatal counseling in extreme prematurity - Insight into preferences from experienced parents

ObjectiveIn-depth analysis of parental preferences in prenatal counseling in extreme prematurity.MethodsA nationwide qualitative interview study among experienced parents of extremely premature babies born at 24^+0/7 – 24^+6/7 weeks of gestation. Semi-structured interviews were held until saturation, transcribed and qualitatively analyzed to search for parental counseling preferences.ResultsThirteen parents were included, most parents decided on active care. Organisation: Parents wanted counseling as soon as possible, and for various reasons they wanted more than one conversation. Supportive material to help visualize complex information was suggested to be helpful, preferably with adjustable levels of detail. An empathetic, honest style with commitment of the counselor was regarded important. Content: Understandable statistics should be used for those who want it. Parents needed different information with respect to the decision-making as opposed to being prepared for future situations. Decision-making: The preferred share of parents’ and doctors’ input in decision-making varied among parents and among situations. Parents expressed that their roles were to take responsibility for and protect their infant.ConclusionsVarious parental preferences for prenatal counseling were found.Practice implicationsCommon parental preferences for the organisation, content and decision-making elements can provide a starting point for personalized prenatal counseling.     

Empowerment programs for parental mental health of preterm infants: A meta-analysis

ObjectiveTo assess the effectiveness of empowerment programs on mental health in parents of preterm infants.MethodsTen databases were searched for randomised controlled trials and quasi-experimental studies published from inception to March 2020, and two reviewers independently and critically assessed trial quality and extracted data.ResultsEight studies with a total of 1029 participants met the inclusion criteria. Empowerment programs significantly improved parental mental health, particularly maternal stress and depression. This meta-analysis also indicated that Creating Opportunities for Parent Empowerment (COPE) had a medium effect on maternal mental health. Both empowerment-based health education and empowerment programs conducted during the infants’ hospitalisation had large effects on maternal mental health, whereas those conducted from hospitalisation to one week after discharge showed no significant effect.ConclusionEmpowerment programs have positive effects on parental mental health, especially for mothers.Practice implicationsOur study provides objective evidence for the development of future empowerment programs.     

Pediatricians’ affective communication behavior attenuates parents’ stress response during the medical interview

ObjectiveTo investigate whether the medical interview in the pediatric context generates a stressful response in parents in form of heightened cortisol activity, and whether pediatricians’ empathetic communication is able to attenuate this stress response.Methods68 parents were recruited at pediatric out-patient and in-patient consultations. Salivary samples were collected between 60 and 30 min prior to the consultation, shortly before the consultation, 20 min as well as 45 min after the consultation. 19 pediatricians participated in the study and effectuated the medical visit as usual. We videotaped the consultations and coded pediatricians’ affective communication using the RIAS and the Four Habits Coding Scheme.ResultsParents’ cortisol increased during the medical visit with a peak at 20 min after the medical encounter. Furthermore, multilevel analysis revealed a lesser increase in parents’ cortisol response associated with pediatricians’ levels in supportive communication behaviors.ConclusionAs indicated by their humoral stress responses, the medical encounter was stressful for the parents. Pediatricians’ affective communication modulated this stress response in that more supportive communication was related to smaller cortisol increases.Practice implicationPediatricians’ affective communication behavior during the medical visit can alleviate parents’ distress and anxiety, representing a source of social and emotional support.     

Impact of Intensivist and Nursing Staff on Critically Ill Patient Mortality: A Retrospective Analysis of the Korean NHIS Cohort Data, 2011–2015

PurposeCritical care medicine continues to evolve. However, critical care cases require increasing amount of medical resources. Intensive care unit (ICU) mortality significantly impacts the overall efficiency of healthcare resources within a system of limited medical resources. This study investigated the factors related to ICU mortality using long-term nationwide cohort data in South Korea.Materials and MethodsThis retrospective cohort study used data of 14905721 patients who submitted reimbursement claims to the Korean Health Insurance Service between January 1, 2011 and December 31, 2015. A total of 1498102 patients who were admitted to all ICU types, except neonatal and long-term acute care hospitals, were enrolled.ResultsOf the total 1498102 participants, 861397 (57.5%) were male and 636705 (42.5%) were female. The mean age at admission was 63.4±18.2 years; most of the subjects were aged over 60 years. During the 5-year period, in-hospital mortality rate was 12.9%. In Cox analysis, both in-hospital and 28-day mortality rates were significantly higher in male patients and those of lower socioeconomic status. As age increased and the number of nursing staff decreased, the mortality risk increased significantly by two or three times. The mortality risk was lower in patients admitted to an ICU of a tertiary university hospital and an ICU where intensivists worked.ConclusionThe number of nursing staff and the presence of an intensivist in ICU were associated with the ICU mortality rate. Also, increasing the number of nursing staff and the presence of intensivist might reduce the mortality rate among ICU patients.     

Teaching medical students to express empathy by exploring patient emotions and experiences in standardized medical encounters

ObjectivesTo increase medical students’ ability to detect contextual and emotional cues and to respond empathetically to patients.Methodsa training course in communication skills and patient-centered care with different teaching activities (didactic, reflective and interactive: workshops and encounters with simulated patients) was delivered to third-year medical students just before their clerkships. The program was evaluated by an external observer (OE) and simulated patients (SP) in 2 or 3 videotaped encounters.ResultsStudents improved significantly from baseline to 3rd interview in all communicative skills and domains explored both in OE (32.4%) and SP (38.3%) measurement. At the end of the course students detected significantly more clues and made more empathetic expressions.ConclusionsThe course seems to improve the ability of students to explore the illness experience, showing more empathy in a more genuine way. This was carried out in consultations lasting 10 min.Practical implicationsThe program is effective and feasible to be applied as a regular formative activity. Further research is needed to assess whether this training program is applicable to students in more advanced educational levels and if it has any additional outcomes.