
Online information for parents caring for their premature baby at home: A focus group study and systematic web search.
Alderdice Fiona,Gargan Phyl,McCall Emma,Franck Linda
Health expectations : an international journal of public participation in health care and health policy
BACKGROUND:Online resources are a source of information for parents of premature babies when their baby is discharged from hospital. OBJECTIVES:To explore what topics parents deemed important after returning home from hospital with their premature baby and to evaluate the quality of existing websites that provide information for parents post-discharge. METHODS:In stage 1, 23 parents living in Northern Ireland participated in three focus groups and shared their information and support needs following the discharge of their infant(s). In stage 2, a World Wide Web (WWW) search was conducted using Google, Yahoo and Bing search engines. Websites meeting pre-specified inclusion criteria were reviewed using two website assessment tools and by calculating a readability score. Website content was compared to the topics identified by parents in the focus groups. RESULTS:Five overarching topics were identified across the three focus groups: life at home after neonatal care, taking care of our family, taking care of our premature baby, baby's growth and development and help with getting support and advice. Twenty-nine sites were identified that met the systematic web search inclusion criteria. Fifteen (52%) covered all five topics identified by parents to some extent and 9 (31%) provided current, accurate and relevant information based on the assessment criteria. CONCLUSION:Parents reported the need for information and support post-discharge from hospital. This was not always available to them, and relevant online resources were of varying quality. Listening to parents needs and preferences can facilitate the development of high-quality, evidence-based, parent-centred resources.
10.1111/hex.12670
Barriers to Transition to Home From the Neonatal Intensive Care Unit: A Qualitative Perspectives of Parents and Healthcare Providers.
Hebballi Nutan B,Kerl Cameron G,Garcia Elisa I,Ottosen Madelene J,Kelly Katherine C,Bartz-Kurycki Marisa A,Tang Brian,Hillman Elizabeth A,Aneji Chiamaka U,Tsao KuoJen,Austin Mary T
The Journal of perinatal & neonatal nursing
The objective of this study was to explore the challenges faced by parents of former neonatal intensive care unit (NICU) patients in transitioning home from parents' and healthcare providers' perspective. We conducted semistructured individual and group interviews with parents of former NICU patients and healthcare providers. Themes from the individual interviews framed the group interviews' contents. The group interviews were recorded and transcribed, and thematic analysis was performed to identify themes. We conducted individual and group interviews with 16 parents and 33 inpatient and outpatient providers from November 2017 to June 2018. Individual interview participants identified several barriers experienced by parents when transitioning their infant home from the NICU including parental involvement and engagement during NICU stay and during the discharge process. Further exploration within group interviews revealed opportunities to improve discharge communication and processes, standardization of parental education that was lacking due to NICU resource constraints, support for parents' emotional state, and use of technology for infant care in the home. Parents of NICU patients face serious emotional, logistical, and knowledge challenges when transitioning their infant home from the NICU. Understanding and mitigating the challenges of transitioning infants from NICU to home require multistakeholder input from both parents and providers.
10.1097/JPN.0000000000000570
Parents' experiences of VOICE: A novel support programme in the NICU.
van den Hoogen Agnes,Eijsermans Rian,Ockhuijsen Henriette D L,Jenken Floor,Oude Maatman Sabine M,Jongmans Marian J,Verhage Lianne,van der Net Janjaap,Latour Jos M
Nursing in critical care
BACKGROUND:Admission of an infant to a neonatal intensive care unit (NICU) is often a stressful experience for parents and can be associated with feelings of inadequacy to fulfil the desirable parental role. The values, opportunities, integration, control, and evaluation (VOICE) programme was developed to engage parents in care, to decrease stress, and to increase empowerment. AIM:To explore the experiences of parents regarding involvement in the VOICE programme during admission of their infant to the NICU. DESIGN:The VOICE programme includes at least five personal structured meetings between parents, nurses, and other health care professionals throughout the pathway from birth, NICU, and follow up. A qualitative design was adopted using semi-structured interviews. Interviews with 13 parents of 11 infants born at <27 weeks' gestational age were conducted: nine mothers and two couples of father and mother. Thematic analysis was deployed. RESULTS:The findings have been described in one overarching theme: "parental empowerment." Parents felt strengthened and were empowered in the development of their role as primary caretaker by the VOICE programme. The parental empowerment theme emerged from four related interpretive themes that were derived: (a) involvement in care, (b) personalized information and communication, (c) transition to a parental role, and (d) emotional support. CONCLUSION:The VOICE programme can be a structured approach used to implement family support in a NICU to empower parents to become a partner in the care of their infant and feel confident. RELEVANCE TO CLINICAL PRACTICE:This study encourages health care professionals to provide parental support through a structured intervention programme, which contributes to the empowerment of parents in the NICU and encouraged them to participate in care and decision-making.
10.1111/nicc.12569
Barriers to, and facilitators of, eHealth utilisation by parents of high-risk newborn infants in the NICU: a scoping review protocol.
BMJ open
INTRODUCTION:Parental presence in the neonatal intensive care unit (NICU) has been demonstrated to enhance infant growth and development, reduce parental anxiety and stress and strengthen parent-infant bonding. Since eHealth technology emerged, research on its utilisation in NICUs has risen substantially. There is some evidence that incorporating such technologies in the NICU can reduce parental stress and enhance parent confidence in caring for their infant.Several countries, including China, restrict parental attendance in NICUs, citing infection control challenges, issues of privacy and confidentiality and perceived additional workload for healthcare professionals. Due to COVID-19 pandemic-related shortages of personal protective equipment and uncertain mode of transmission, many NICUs around the world closed to parental visiting and engagement in neonatal care.There is anecdotal evidence that, given pandemic-related restrictions, eHealth technologies, have increasingly been used in NICUs as a potential substitute for in-person parental presence.However, the constraints and enablers of technologies in these situations have not been exhaustively examined. This scoping review aims to update the literature on eHealth technology utilisation in the NICU and to explore the literature on the challenges and facilitators of eHealth technology implementation to inform future research. METHODS AND ANALYSIS:The five-stage Arksey and O'Malley methodological framework and the Joanna Briggs Institute scoping review methodology will serve as the foundation for this scoping review. Eight databases will be searched for the relevant literature published between January 2000 and August 2022 in either English or Chinese. Grey literature will be manually searched. Data extraction and eligibility screening will be carried out by two impartial reviewers. There will be periods of both quantitative and qualitative analysis. ETHICS AND DISSEMINATION:Since all data and information will be taken from publicly accessible literature, ethical approval would not be necessary. A peer-reviewed publication will be published with the results of this scoping review. TRIAL REGISTRATION NUMBER:This scoping review protocol was registered in Open Science Framework and can be found here: https://osf.io/AQV5P/.
10.1136/bmjopen-2022-068759
Transition From Hospital to Home in Parents of Preterm Infants: Revision, Modification, and Psychometric Testing of the Questionnaire.
Boykova Marina
Journal of nursing measurement
BACKGROUND AND PURPOSE:Transition from hospital to home in parents of prematurely born infants can be challenging. This methodological study aimed to develop an instrument to measure transitional problems in parents after hospital discharge. METHODS:Kenner's Transition Questionnaire was modified based on findings of the literature review and a qualitative study. Content validity of the revised tool was determined by a panel of experts, and field testing was conducted via an online survey of parents of preterm infants ( = 704). Exploratory factor analysis (principal axis factoring and direct oblimin rotation) was performed. RESULTS:Results showed four correlated factors in parental transition from hospital to home: Isolation, Worry, Confidence, and Professional Support (17 items total). Factor loadings ranged from .59 to .87, and reliability estimates ranged from .77 to .87. CONCLUSION:The revised instrument demonstrated adequate psychometric characteristics; further testingand validation of the instrument is warranted.
10.1891/1061-3749.26.2.296
Enhancing NICU Care and Communication: Perspectives of Moderately Preterm Infant Parents.
Pediatrics
BACKGROUND:Moderately preterm infants (MPTI) comprise a large proportion of NICU admissions and are an understudied population. The unique experience of families with MPTIs has yet to be examined in the literature. Describing MPTI parent needs and preferences may inform interventions to improve care and outcomes for this population. METHODS:Semistructured qualitative interviews were performed with English-speaking birth parents of infants born between 32 and 34 weeks gestation to describe their NICU experience and identify areas for improvement specifically surrounding care team inclusion, education, discharge, and communication. Interviews were recorded, transcribed, and analyzed using directed content analysis. Enrollment ceased when the data reached thematic saturation. RESULTS:Sixteen birth parents participated. Four themes emerged around parent-medical team connectedness, parental confusion, discharge readiness, and the desire for a use of a mix of in-person and electronic communication methods (e-mail, texting, apps, etc) for communication. MPTI parents valued a strong connection with the medical team; however, they described a lack of knowledge regarding the reasons for admission and ongoing management. Near discharge, parents desired more information regarding feeding, reflux, and breathing patterns. Parents preferred in-person discussions but described a role for electronic methods to improve their understanding of their infant and discharge readiness. CONCLUSIONS:From the MPTI parent perspective, clinicians can focus improvement efforts on communication, specifically around reasons for admission, discharge planning, and anticipatory guidance. These results may serve as a foundation for initiatives to improve the MPTI parent experience and potentially parent and MPTI outcomes.
10.1542/peds.2023-064419
Empowerment programs for parental mental health of preterm infants: A meta-analysis.
Zhang Qing,Wu Jinhua,Sheng Xiaoyu,Ni Zhihong
Patient education and counseling
OBJECTIVE:To assess the effectiveness of empowerment programs on mental health in parents of preterm infants. METHODS:Ten 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. RESULTS:Eight 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. CONCLUSION:Empowerment programs have positive effects on parental mental health, especially for mothers. PRACTICE IMPLICATIONS:Our study provides objective evidence for the development of future empowerment programs.
10.1016/j.pec.2021.01.021
Application of e-health on neonatal intensive care unit discharged preterm infants and their parents: Protocol for systematic review and meta-analysis.
Digital health
Background:After preterm birth, parents often conformed with difficulties such as negative emotions, lack of care knowledge and skills, and insufficient professional support. As a remote health guidance method, e-health can provide a series of support for premature infants and their parents during the transition period from neonatal intensive care unit (NICU) to home care. Objectives:To determine the efficacy of e-health interventions in discharged preterm infants as well as their parents, and to describe the process outcomes and elements of these e-health interventions to inform the effective design of future interventions. Methods:The systematic review of the randomized and non-randomized controlled trials on the follow-up effect of e-health on preterm infants and their parents discharged from NICU between the inception to May 2023 will be electronically searched in the following nine databases: Web of Science, CINAHL Complete (EBSCO), PubMed, Embase, the Cochrane Library, Ovid MEDLINE, China National Knowledge Infrastructure, WANFANG DATA, and SinoMed. Quality will be appraised, respectively, via the revised tool to assess risk of bias (RoB 2) and the tool for risk of bias in non-randomized studies of interventions (ROBINS-I). The main outcome indicators of preterm infants are breastfeeding rate, readmission rate, neurobehavioral development, and premature infant's body mass. The outcome indicators for parents of premature infants are anxiety, depression scale, and parenting competency scale. The RevMan 5.4 software provided by the Cochrane Collaboration will be used for statistical analysis of the data. Conclusion:The results of this study may provide future development opportunities for e-health follow-up prevention in preterm infants and may support evidence-based decision-making for e-health interventions of post-discharge developmental support in preterm infants. PROSPERO registration number:CRD42023410334.
10.1177/20552076231205271
The effectiveness of online breastfeeding education and support program on mothers of preterm infants: A quasi-experimental study.
Midwifery
OBJECTIVE:To develop a WeChat-mini-program-based Online breastfeeding education and support program and explore its impacts on promoting mothers of preterm infants' breastfeeding knowledge, attitudes, self-efficacy, and rates. DESIGN, SETTING, AND PARTICIPANTS:This was a quasi-experimentation with two-group comparisons. The eligible preterm mother-infant pairs were recruited from the NICU within seven days postpartum. The first 25 mothers admitted to the NICU during the study period were included in the control group, and the following 25 mothers were in the intervention group according to the admission order of their preterm infants. A generalized linear mixed model was used to detect the effects of the online intervention program and the interaction effects of group and time. INTERVENTIONS:The participants received a 3-month online breastfeeding intervention from a WeChat mini program for the intervention group. MEASUREMENTS:Mothers of preterm infants' breastfeeding knowledge, attitudes, self-efficacy, and breastfeeding rates of different patterns were respectively evaluated by the Breastfeeding Knowledge Questionnaire (BKQ), Iowa Infant Feeding Attitude Scale (IIFAS), and Breastfeeding Self-Efficacy Scale (BSES) at three different points of times including before intervention (T0), at one month postpartum (T1) and three months postpartum (T2). FINDINGS:The breastfeeding knowledge significantly differed between the two groups but without differences between different time points and in the grouping*time interaction. Within the intervention group, significant improvements were observed from T0 to T2 and T1 to T2. No significant differences in breastfeeding attitudes, self-efficacy, and breastfeeding rates were found between and within groups. KEY CONCLUSIONS:The WeChat-mini-program-based online breastfeeding intervention may improve the breastfeeding knowledge level of mothers of preterm infants but has no significant impact on mothers' breastfeeding attitudes, breastfeeding self-efficacy, and breastfeeding rates. IMPLICATIONS FOR PRACTICE:The WeChat mini program can be used to improve the breastfeeding knowledge level of mothers of preterm infants. Future interventions need to target both mothers of preterm infants and their family members by combing online and offline approaches.
10.1016/j.midw.2024.103924
Mobile applications to support parents in the transition from neonatal intensive care unit to home: a narrative review.
mHealth
Background and Objective:Among the unique challenges for parents in the transition of infant care from neonatal intensive care unit (NICU) to home are the medical complexity of their babies and the psychological burden of caring for this special patient population. Despite the increased use and accessibility of smartphones, mobile applications (apps) intended for use by families during this transition remain underdeveloped and understudied. Apps to support parents of infants in the NICU represent an accessible potential solution to mitigate existing disparities in follow up. Through this Narrative Review, we intend to describe the characteristics of and development process for apps intended to address the challenges parents with NICU babies may face, and to provide recommendations for further development of apps for this purpose. Methods:We conducted a review of articles published between November 2012 to November 2022. This search spanned three major databases, PubMed, Embase, and CINAHL, using a controlled vocabulary and keywords for mobile apps and the NICU. These three databases generated 473 articles for review. Utilizing the online primary screening and data extraction tool Covidence, we ultimately included eight articles in this narrative review. Key Content and Findings:There are few existing mobile apps intended to ease the transition home for parents of babies in the NICU. There are even fewer apps that have been critically evaluated using acceptable methods and produced with contribution from healthcare practitioners. Among the existing articles on app solutions to benefit education and socioemotional support for parents, many emphasized the importance of including key stakeholders during the app development process and highlighted both qualitative and quantitative measures for assessing relative success of these apps in a clinical setting. Conclusions:Although the experiences of parents with infants admitted to the NICU have been well-studied, there remain relatively few existing apps to provide educational and socioemotional support to this population. Future studies should focus on an iterative process of app development whereby both parents and providers are closely involved, in combination with critical appraisal of the app to assess for appropriate support and education of caregivers.
10.21037/mhealth-23-10
Emotional support for parents with premature children admitted to a neonatal intensive care unit: a qualitative phenomenological study.
Rafael-Gutiérrez Sabiniana San,García Purificación Escobar,Prellezo Alicia Saelices,Paulí Laura Rodriguez,Del-Castillo Beatriz Longueira,Sánchez Rafaela Blanco
The Turkish journal of pediatrics
BACKGROUND AND OBJECTIVES:Parents who have a premature child in neonatal intensive care units (NICUs) are in a stressful situation. The aim of this paper is to analyze the emotional support received by parents with premature children admitted to NICUs. METHODS:A phenomenological qualitative study with an explanatory and interpretative approach was employed. RESULTS:The findings are: 1) The experience and emotions of a premature delivery; showing sadness, guilt and despair, stress, anxiety, and uncertainty over the future of their child. 2) The emotional support received by the father/mother of the partner; discussion of how their partner is cared for, as well as the care given to the premature child and other children in the family; the stress that this causes them on not being able visit all at once. 3) The emotional support offered by the health professionals (doctors, nurses, etc.); parents indicate that they have received very strong support from the nurses, but also that they were not always asked about their feelings when in the NICU. 4) The informal emotional support of relatives and parents in the NICU. After talking with other support mothers, the mothers then felt less guilty. CONCLUSION:As regards premature birth, the mothers showed feelings of sadness and guilt, asked themselves where they had failed and what they had done wrong.
10.24953/turkjped.2020.03.011
Outcome's Classification in Mobile Applications Tailored to Parents of Premature Infants: A Systematic Review.
Iranian journal of public health
Background:Integration of healthcare services for preterm neonates at home and hospital by mobile technology is an economical and convenient intervention, which is being increasingly applied worldwide. We aimed to classify the outcomes of mobile applications tailored to parents of premature infants. Methods:This systematic review was conducted by searching the six main databases until May 2021. Mobile applications tailored to parents of premature infants and the reported outcomes of this technology were identified and classified. Quality of screened articles checked by MMAT tool. Results:Overall, 10703 articles were retrieved, and after eliminating the duplicated articles, 9 articles were reviewed ultimately. Identified outcomes were categorized into three groups parental, application, and neonatal outcomes. In the parental outcomes, maternal stress/stress coping, parenting self-efficacy, satisfaction, anxiety, partnership advocacy/improved parent-infant relationship, feeling of being safe, reassurance and confidence, increase awareness, as well as discharge preparedness, were identified. In the application outcomes, application usage, ease of use/user-friendly, and usability of the designed application were placed. Finally, the neonatal outcomes include health and clinical items. Conclusion:Mobile applications can be useful in prematurity for educating pregnant mothers, managing stress and anxiety, supporting families, and preparing for discharge. Moreover, due to the coronavirus condition, providing remote services for parents is an appropriate solution to reduce the in-person visits to neonatal care centers. Development of tailored apps can promote the neonates' health and reduce their parents' stress.
10.18502/ijph.v52i8.13402
Promoting Mental Health in Parents of Young Children Using eHealth Interventions: A Systematic Review and Meta-analysis.
Clinical child and family psychology review
Parent stress and mental health problems negatively impact early child development. This study aimed to systematically review and meta-analyze the effect of eHealth interventions on parent stress and mental health outcomes, and identify family- and program-level factors that may moderate treatment effects. A search of PsycINFO, Medline, CINAHL, Cochrane and Embase databases was conducted from their inception dates to July 2020. English-language controlled and open trials were included if they reported: (a) administration of an eHealth intervention, and (b) stress or mental health outcomes such as self-report or clinical diagnosis of anxiety and depression, among (c) parents of children who were aged 1-5 years old. Non-human studies, case reports, reviews, editorials, letters, dissertations, and books were excluded. Risk of bias was assessed using the National Institutes of Health (NIH) Study Quality Assessment Tools. Random-effects meta-analyses of standardized mean differences (SMD) were conducted and meta-regressions tested potential moderators. 38 studies were included (N = 4360 parents), from 13 countries (47.4% USA). Meta-analyses indicated eHealth interventions were associated with better self-reported mental health among parents (overall SMD = .368, 95% CI 0.228, 0.509), regardless of study design (k = 30 controlled, k = 8 pre-post) and across most outcomes (k = 17 anxiety, k = 19 depression, k = 12 parenting stress), with small to medium effect sizes. No significant family- or program-level moderators emerged. Despite different types and targets, eHealth interventions offer a promising and accessible option to promote mental health among parents of young children. Further research is needed on moderators and the long-term outcomes of eHealth interventions. Prospero Registration: CRD42020190719.
10.1007/s10567-022-00385-5
A Study of Maternal Competence in Preterm Birth Condition, during the Transition from Hospital to Home: An Early Intervention Program's Proposal.
Polizzi Concetta,Perricone Giovanna,Morales Maria Regina,Burgio Sofia
International journal of environmental research and public health
The study was conducted with 104 mothers (average age 32.5 years, SD 6.1) of preterm infants (very and moderately preterm but still healthy) to monitor the perceived maternal role competence from the time of hospitalisation to post-discharge, in order to define an intervention program to support mothers during this transition. A targeted Q-Sort tool (Maternal Competence Q-Sort in preterm birth) was applied at two different times as a self-observation tool for parenting competence in neonatology. A tendency towards dysregulation of the maternal role competence was detected, mainly in terms of low self-assessment and was found to worsen during post-discharge, particularly with regard to caregiving ability. This study suggests the importance of accompanying parenting competence in preterm birth conditions, not only during hospitalisation in the Neonatal Intensive Care Unit (NICU) but also following discharge in order to promote the development of premature infants. This paper reports in the last part a specific integrated psychoeducational intervention program (psychologist and nurses), which we defined precisely in light of the suggestions offered by the study data on perceived maternal competence created with the Q-sort.
10.3390/ijerph18168670
Parent perspectives of neonatal tele-homecare: A qualitative study.
Garne Holm Kristina,Brødsgaard Anne,Zachariassen Gitte,Smith Anthony C,Clemensen Jane
Journal of telemedicine and telecare
INTRODUCTION:Neonatal homecare for preterm infants is a method of supporting families and monitoring infant growth in the home setting. Telehealth may be used to deliver specialist neonatal care remotely, using online communication methods. This study explored parental experiences with neonatal tele-homecare (NTH). METHODS:Semi-structured interviews were conducted with 49 parents whose preterm infants had received NTH from a neonatal intensive care unit (NICU) in Denmark. Interview transcripts were analysed using Malterud's systematic text condensation. RESULTS:Parents experienced NTH as a personalised method for linking to specialist staff in the NICU. NTH promoted the parent's role as the primary care provider, further strengthening the parent-infant relationship. DISCUSSION:From the perspective of parents with preterm infants requiring specialist care, NTH is a useful method of supporting families in the home. Telehealth provides effective communication links with NICU specialists and encourages family-centred care.
10.1177/1357633X18765059
Integrative Review of Technology to Support Communication With Parents of Infants in the NICU.
Epstein Elizabeth G,Arechiga Jaqueline,Dancy Margaret,Simon Jordan,Wilson Daniel,Alhusen Jeanne L
Journal of obstetric, gynecologic, and neonatal nursing : JOGNN
OBJECTIVE:To synthesize findings from the published literature on the use of technology in the NICU to improve communications and interactions among health care providers, parents, and infants. DATA SOURCES:Electronic databases including Ovid MEDLINE, CINAHL, Web of Science, and Google Scholar were searched for related research published through May 2016. The reference lists of all studies were reviewed, and a hand search of key journals was also conducted to locate eligible studies. STUDY SELECTION:Eleven studies (five quantitative, two qualitative, and four mixed methods) were identified that met the inclusion criteria. Only studies published in English were included. DATA EXTRACTION:Whittemore and Knafl's methodology for conducting integrative reviews was used to guide data extraction, analysis, and synthesis. Data were extracted and organized according to the following headings: author, year, and location; study purpose and design; sample size and demographics; technology used; study findings; and limitations. DATA SYNTHESIS:Various technologies were used, including videoconferencing, videophone, and commercially available modalities such as Skype, FaceTime, AngelEye, and NICView Webcams. In the 11 studies, three main outcomes were evaluated: parents' perception of technology use, health care providers' perceptions of technology use, and objective outcomes, such as parental anxiety or stress or infant length of stay. Overall, parents and health care providers perceived the varied interventions quite favorably, although a few significant differences were found for the objective measures. CONCLUSION:Several interventions have been tested to improve communications and promote interactions among NICU health care team members, parents, and infants. Although initial findings are positive, research in this area is quite limited, and the reviewed studies had several limitations. There is a significant need for further rigorous research to be conducted with diverse samples.
10.1016/j.jogn.2016.11.019
Coached, Coordinated, Enhanced Neonatal Transition (CCENT): protocol for a multicentre pragmatic randomised controlled trial of transition-to-home support for parents of high-risk infants.
Orkin Julia,Major Nathalie,Esser Kayla,Parmar Arpita,Couture Elise,Daboval Thierry,Kieran Emily,Ly Linh,O'Brien Karel,Patel Hema,Synnes Anne,Robson Kate,Barreira Lesley,Smith Wanda L,Rizakos Sara,Willan Andrew R,Yaskina Maryna,Moretti Myla E,Ungar Wendy J,Ballantyne Marilyn,Church Paige Terrien,Cohen Eyal
BMJ open
INTRODUCTION:Having an infant admitted to the neonatal intensive care unit (NICU) is associated with increased parental stress, anxiety and depression. Enhanced support for parents may decrease parental stress and improve subsequent parent and child outcomes. The Coached, Coordinated, Enhanced Neonatal Transition (CCENT) programme is a novel bundled intervention of psychosocial support delivered by a nurse navigator that includes Acceptance and Commitment Therapy-based coaching, care coordination and anticipatory education for parents of high-risk infants in the NICU through the first year at home. The primary objective is to evaluate the impact of the intervention on parent stress at 12 months. METHODS AND ANALYSIS:This is a multicentre pragmatic randomised controlled superiority trial with 1:1 allocation to the CCENT model versus control (standard neonatal follow-up). Parents of high-risk infants (n=236) will be recruited from seven NICUs across three Canadian provinces. Intervention participants are assigned a nurse navigator who will provide the intervention for 12 months. Outcomes are measured at baseline, 6 weeks, 4, 12 and 18 months. The primary outcome measure is the total score of the Parenting Stress Index Fourth Edition Short Form at 12 months. Secondary outcomes include parental mental health, empowerment and health-related quality of life for calculation of quality-adjusted life years (QALYs). A cost-effectiveness analysis will examine the incremental cost of CCENT versus usual care per QALY gained. Qualitative interviews will explore parent and healthcare provider experiences with the intervention. ETHICS AND DISSEMINATION:Research ethics approval was obtained from Clinical Trials Ontario, Children's Hospital of Eastern Ontario Research Ethics Board (REB), The Hospital for Sick Children REB, UBC Children's and Women's REB and McGill University Health Centre REB. Results will be shared with Canadian level III NICUs, neonatal follow-up programmes and academic forums. TRIAL REGISTRATION NUMBER:ClinicalTrials.gov Registry (NCT03350243).
10.1136/bmjopen-2020-046706
Reducing parental trauma and stress in neonatal intensive care: systematic review and meta-analysis of hospital interventions.
Sabnis Animesh,Fojo Sofia,Nayak Sameera S,Lopez Elizabeth,Tarn Derjung M,Zeltzer Lonnie
Journal of perinatology : official journal of the California Perinatal Association
OBJECTIVE:To classify NICU interventions for parental distress and quantify their effectiveness. STUDY DESIGN:We systematically reviewed controlled studies published before 2017 measuring NICU parental distress, defined broad intervention categories, and used random-effects meta-analysis to quantify treatment effectiveness. RESULTS:Among 1643 unique records, 58 eligible trials predominantly studied mothers of preterm infants. Interventions tested in 22 randomized trials decreased parental distress (p < 0.001) and demonstrated improvement beyond 6 months (p < 0.005). In subgroup analyses, complementary/alternative medicine and family-centered instruction interventions each decreased distress symptoms (p < 0.01), with fathers and mothers improving to similar extents. Most psychotherapy studies decreased distress individually but did not qualify for meta-analysis as a group. CONCLUSION:NICU interventions modestly reduced parental distress. We identified family-centered instruction as a target for implementation and complementary/alternative medicine as a target for further study. Investigators must develop psychosocial interventions that serve NICU parents at large, including fathers and parents of full-term infants.
10.1038/s41372-018-0310-9
Types, Evidence, and Resources of Interventions Focused on Improving the Psychosocial Well-being of Parents of Premature/Sick Infants: A Scoping Review.
Advances in neonatal care : official journal of the National Association of Neonatal Nurses
BACKGROUND:Parents of infants born premature and/or sick and who require neonatal care are at risk of poor mental health. Currently, there is no comprehensive knowledge about interventions (ie, types, evidence, resources) that have been exclusively designed to improve the psychosocial well-being of this population group. PURPOSE:To undertake a systematic scoping review of interventions focused on improving the psychosocial well-being of parents of sick/premature infants who required neonatal care to identify the ( a ) types of interventions, ( b ) evidence of the interventions, and ( c ) level of resources required to deliver the interventions. SEARCH STRATEGY:e searched 7 databases (MEDLINE, CINAHL, PsycINFO, Cochrane, EMBASE, Web of Science, and Global Index), reviewed references, and followed up key authors. RESULTS:From 10,516 hits, 38 articles met the inclusion criteria (36 different studies/interventions). Studies included creative oriented (n = 11), group/peer support (n = 4), relaxation/mindfulness (n = 3), spiritual/religious (n = 4), psychotherapeutic-based (n = 11), and "other" (n = 3) (eg, sleep, acupuncture). Most had been undertaken in high-income settings with mothers and required varying levels of resources within and between the different intervention types. While some interventions were effective, there was high heterogeneity with similar interventions using different designs, protocols, and outcomes. Most intervention types included studies that highlighted what parents valued (eg, self-care, relaxation, social opportunities). IMPLICATIONS FOR RESEARCH:Evidence highlights a wide range of potential interventions for nursing and other specialist staff to consider and offers insights into potential mechanisms of effectiveness to underpin future intervention design.
10.1097/ANC.0000000000000913
Psychosocial interventions and support programs for fathers of NICU infants - A comprehensive review.
Ocampo Maria J,Tinero Jason A,Rojas-Ashe Elsa E
Early human development
The experience of having a child in the neonatal intensive care unit (NICU) is often unexpected, traumatic, and presents numerous stressors for new fathers. Past research has shown that parents of all genders with children in the NICU experience clinically significant psychological symptoms, yet the bulk of research and intervention efforts to date have focused on the needs of mothers. This paper will provide a review of the literature, outline current knowledge about the specific needs of men with children in the NICU, and recommend areas of focus for future research. The paper will also highlight the need to tailored interventions that specifically address the unique needs of fathers.
10.1016/j.earlhumdev.2020.105280
Development and Effects of Mobile-Application-Based Parenting Support Program for Premature Infants' Mothers.
Healthcare (Basel, Switzerland)
BACKGROUND:Premature infants are separated from their parents after birth and are admitted to the neonatal intensive care unit. Separation of babies from mothers causes various problems. Therefore, as the number of premature infants increases every year, educational programs to continuously support baby care are needed. METHODS:In this study, a nonequivalent control group non-synchronized design was employed. The subjects of the study were 52 mothers of premature infants (16 in the app-based program group, 18 in the electronic document group, and 18 in the control group) using a portal site for parents from February to April 2023. The app-based program and electronic document group followed a parenting support program for two weeks. RESULTS:There were significant differences in maternal confidence between the app-based, electronic document, and control groups (F = 7.354, = 0.002). CONCLUSIONS:Providing necessary information and emotional support through professional counseling centers' app-based programs for premature infants' mothers, and providing interaction through member community bulletin boards, are proposed to form an effective educational program.
10.3390/healthcare11192639
Enhancing Parents' Well-Being after Preterm Birth-A Qualitative Evaluation of the "Transition to Home" Model of Care.
International journal of environmental research and public health
There are few programs available aimed at preventing short- and long-term negative consequences after preterm birth and covering the entire care continuum. The "Transition to Home (TtH)" model is such a program, offering structured, individual support for families with preterm infants before and after hospital discharge. This study gathers and examines the parents' views of receiving support from an interprofessional team under the TtH model of care during hospitalization and after discharge. Using a qualitative explorative design, 39 semi-structured interviews with parents were analyzed thematically. From this analysis, three main themes were identified: (1) TtH and the relevance of continuity of care; (2) Enhancement of parents' autonomy and self-confidence; (3) Perception of interprofessional collaboration. Within these themes, the most relevant aspects identified were continuity of care and the appointment of a designated health care professional to anchor the entire care continuum. Emotional support complemented by non-medical approaches, along with strength-based and family resource-oriented communication, also emerged as key aspects. Continuous, family-centered care and well-organized interprofessional collaboration promote the well-being of the family after a premature birth. If the aspects identified in this study are applied, the transition from hospital to home will be smoothened for the benefit of affected families.
10.3390/ijerph19074309
Parents' early healthcare transition experiences with preterm and acutely ill infants: a scoping review.
Child: care, health and development
BACKGROUND:Parents undergo multiple transitions following the birth of an ill infant: their infant's illness-health trajectory, neonatal intensive care unit hospitalization and transfers from one healthcare setting to another, while also transitioning to parenthood. The objective of this review was to map and synthesize evidence on the experiences and needs of parents of preterm or ill infants as they transition within and between healthcare settings following birth. METHODS:The scoping review followed Arskey and O'Malley's () framework, enhanced by Levac et al. (). Relevant studies were identified through a comprehensive search strategy of scientific and grey literature databases, online networks, Web of Science and citation lists of relevant articles. Inclusion criteria encompassed a focus on infants undergoing a healthcare transition, and the experiences and needs of parents during transition. Studies were appraised for design quality, and data relevant to parent experiences were extracted and underwent thematic analysis. RESULTS:A total of 7773 records were retrieved, 90 full texts reviewed and 11 articles synthesized that represented a total sample of 435 parents of preterm or ill infants. Parents reported on their experiences in response to their infant's transition within and between hospitals and across levels of neonatal intensive care unit, intermediate and community hospital care. Ten studies used qualitative research methods, while one employed quantitative survey methods. Four key themes were identified: that of parent distress throughout transition, parenting at a distance, sources of stress and sources of support. Parents' stress resulted from not being informed or involved in the transition decision, inadequate communication and perceived differences in cultures of care across healthcare settings. CONCLUSIONS:Opportunities to improve parents' early transition experiences include enhanced engagement, communication, information-sharing and shared decision-making between health care providers and parents. Future areas of research should focus on early transition interventions to advance parent capacity, confidence and closeness as the primary nurturer.
10.1111/cch.12458
eHealth usage among parents to premature or surgically treated neonates: associations with eHealth literacy, healthcare satisfaction or satisfaction with an eHealth device.
BMC pediatrics
BACKGROUND:A specific eHealth device, a surf tablet, was developed for bridging between advanced in-hospital care and children's homes. Since little is known about determinators for parental eHealth usage, the study's aim was to explore if parents' usage of the device was associated with their eHealth literacy, or their satisfaction with their child's healthcare or with the specific surf tablet. METHODS:In this explorative usage and questionnaire study, parents to neonates who were discharged home after advanced in-hospital care were included. Their surf tablet usage at maximum 30 days after discharge was reported as frequency (%) of active days (usage days/days having the device) and median number of tablet activities (chat and photo) per usage day. eHealth literacy (eHealth Literacy Questionnaire; eHLQ), healthcare satisfaction (PedsQL Healthcare Satisfaction Generic Module), and satisfaction with the surf tablet were explored regarding tablet usage. Statistics were described in median (range) and (%) using non-parametric and regression models (p < 0.05). RESULTS:Parents to 32 children (11 premature, 21 operated) were included. Active days with eHealth communication using the device was 39% (9.0/29.5), with 2.0 (1.0-4.2) usage occasions per active day. Activity on the tablet was higher among parents reporting to be very satisfied or satisfied with the device (n = 25) compared with neutral/dissatisfied parents (n = 7) (2.8 vs. 2.2 vs. 1.6 activities) (p = 0.030), while their frequency of active days did not differ (31.6% vs. 38.3% vs. 40%) (p = 0.963). A higher eHealth literacy was not associated with frequency of active days (0.926 (0.652-1.317); p = 0.659) or number of eHealth activities (0.973 (0.758-1.250); p = 0.825). Healthcare satisfaction was not associated with higher frequency of active days 0.996 (0.983-1.009; p = 0.519); neither was number of eHealth activities 1.001 (0.991-1.011; p = 0.883). CONCLUSION:In this study, eHealth usage was associated with parental satisfaction with the specific eHealth device, but not with eHealth literacy or healthcare satisfaction. To assure equal access to healthcare when using eHealth, the user-friendliness of the device seems to be crucial, and technical support needs to be in place. CLINICALTRIALS: GOV REGISTRATION IDENTIFIER:NCT04150120 (04/11/2019).
10.1186/s12887-023-04340-3
Effects of a transition home program on preterm infant emergency room visits within 90 days of discharge.
Vohr B,McGowan E,Keszler L,O'Donnell M,Hawes K,Tucker R
Journal of perinatology : official journal of the California Perinatal Association
OBJECTIVE:To evaluate effects of a transition home program (THP) and risk factors on emergency room (ER) use within 90 days of discharge for preterm (PT) infants <37 weeks gestation. STUDY DESIGN:This is a prospective 3-year cohort study of 804 mothers and 954 PT infants. Mothers received enhanced neonatal intensive care unit transition support services until 90 days postdischarge. Regression models were run to identify the effects of THP implementation year and risk factors on ER visits. RESULTS:Of the 954 infants, 181 (19%) had ER visits and 83/181 (46%) had an admission. In regression analysis, THP year 3 vs year 1 and human milk at discharge were associated with decreased risk of ER visits, whereas increased odds was associated with non-English speaking, maternal mental health disorders and bronchopulmonary dysplasia. CONCLUSION:Enhanced THP services were associated with a 33% decreased risk of all ER visits by year 3. Social and environmental risk factors contribute to preventable ER visits.
10.1038/jp.2017.136
Understanding the Steps Toward Mobile Early Intervention for Mothers and Their Infants Exiting the Neonatal Intensive Care Unit: Descriptive Examination.
Baggett Kathleen M,Davis Betsy,Landry Susan H,Feil Edward G,Whaley Anna,Schnitz Alana,Leve Craig
Journal of medical Internet research
BACKGROUND:Neonatal intensive care unit (NICU) history, combined with systemic inequities for mothers of nondominant cultures and mothers who are socioeconomically disadvantaged, places infants at an extraordinary risk for poor developmental outcomes throughout life. Although receipt of early intervention (EI) is the best single predictor of developmental outcomes among children with and at risk for early developmental delays, mothers and infants with the greatest needs are least likely to receive EI. Mobile internet-based interventions afford substantial advantages for overcoming logistical challenges that often prevent mothers who are economically disadvantaged from accessing EI. However, the bridge from the NICU to a mobile internet intervention has been virtually unexplored. OBJECTIVE:This study aims to examine progression flow from NICU exit referral to an early mobile internet intervention to increase EI access and promote parent mediation of infant social-emotional and communication development. METHODS:Three NICUs serving the urban poor in a Midwestern city were provided support in establishing an electronic NICU exit referral mechanism into a randomized controlled trial of a mobile internet intervention for mothers and their infants. Measurement domains to reflect the bridge to service included each crucial gateway required for navigating the path into Part C EI, including referral, screening, assessment, and intervention access. An iterative process was used and documented to facilitate each NICU in establishing an individualized accountability plan for sharing referral materials with mothers before their NICU exit. Subsequent to the referral, progression flow was documented on the basis of a real-time electronic recording of service receipt and contact records. Mother and infant risk characteristics were also assessed. Descriptive analyses were conducted to summarize and characterize each measurement domain. RESULTS:NICU referral rates for EI were 3 to 4 times higher for open-shared versus closed-single gatekeeper referral processes. Of 86 referred dyads, 67 (78%) were screened, and of those screened, 51 (76%) were eligible for assessment. Of the 51 assessment-eligible mothers and infants, 35 dyads (69%) completed the assessment and 31 (89%) went on to complete at least one remote coaching intervention session. The dyads who accessed and engaged in intervention were racially and ethnically diverse and experiencing substantial adversity. CONCLUSIONS:The transition from the NICU to home was fraught with missed opportunities for an EI referral. Beyond the referral, the most prominent reason for not participating in screening was that mothers could not be located after exiting the NICU. Stronger NICU referral mechanisms for EI are needed. It may be essential to initiate mobile interventions before exiting the NICU for maintaining post-NICU contact with some mothers. In contrast to a closed, single point of referral gatekeeper systems in NICUs, open, shared referral gating systems may be less stymied by individual service provider biases and disruptions.
10.2196/18519
Effective stress intervention programs for parents of premature children: A systematic review.
Stress and health : journal of the International Society for the Investigation of Stress
The birth of a child alters family dynamics and can be stressful for parents, especially in the case of prematurity. This article carried out a systematic review on interventions in parents to reduce the stress experienced by the birth of a premature infant. The aims were to describe and classify the different interventions and to have an overview of their effectiveness. We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide and the PICO model. For searching the bibliography, we used Web of Science, Science Direct, PubMed and PsycINFO databases. From a total of 450 articles identified, this review finally included 46 studies with empirical evidence. The articles clustered into different types of interventions, such as psychoeducational and parental or maternal support programs, relaxation techniques, expressive writing, art therapy, music therapy and interventions related to interaction and tactile stimulation. There is a wide range of effectiveness in reducing parental stress to a greater or lesser degree. There is a great heterogeneity of interventions. Despite that, they all have a parental educational component that needs to be studied in greater depth.
10.1002/smi.3194
Developing eHealth in neonatal care to enhance parents' self-management.
Scandinavian journal of caring sciences
BACKGROUND:Discharge from a neonatal care unit is often experienced as a vulnerable time for parents. By communicating through digital technology, it may be possible to improve the support for parents and thereby make the transition from hospital to home less stressful. AIM:To develop an eHealth device supporting the transition from hospital to home for parents with a preterm-born child in Sweden using participatory design. METHOD:Employing a framework of complex interventions in health care using participatory design. Parents of preterm-born infants and professionals at a neonatal department identified specific technical requirements for an eHealth device to be developed in the context of neonatal care and neonatal home care. The prospective end-users - parents and professionals - were continuously involved in the process of designing solution prototypes through meetings, verbal and written feedback, and interviews. The interviews were analysed using thematic analysis. RESULTS:Technical development was carried out with the perspectives of professionals and parents in mind, resulting in an eHealth application for computer tablets. The findings from the interviews with the parents and professionals revealed three categories: The tablets felt secure, easy to use and sometimes replaced visits to hospital and at home. CONCLUSION:The use of participatory design to develop an eHealth device to support a safe transition from hospital to home can benefit parents, the child, the family, and professionals in neonatal care.
10.1111/scs.12994
Early stress during NICU stay and parent-reported health-related quality of life after extremely preterm birth: an exploratory study with possible targets for early intervention.
Frontiers in pediatrics
Introduction:The association between neonatal intensive care unit (NICU) related stress in preterm infants and their health-related quality of life (HRQoL) in the first year following preterm birth remains unexplored. Understanding this association is crucial for enhancing preventive and supportive measures for infants and parents within and beyond the NICU. Methods:From a single center observational cohort study, we included infants with gestational ages below 30 weeks and/or birth weights under 1,000 grams. HRQoL was quantified using the Infant Quality of Life Instrument (IQI) at 3-, 6-, 9- and 12-months corrected age, covering seven domains. NICU stress was quantified using the Neonatal Infant Stressor Scale (NISS) for the first week of life. We performed Spearman's correlation analyses to test this association. Results:Of the 45 included infants, the IQI was completed for 27 (60%) at 3, 15 (33%) at 6, 14 (31%) at 9 and 15 (33%) at 12 months. The HRQoL sum scores were related to neonatal stress at 9 and 12 months ( = 0.643 and 0.591, = 0.013 and = 0.019, respectively) but not at 3 and 6 months ( = -0.001 and -0.077 respectively, > 0.05). Higher NICU stress tended to be associated with more respiratory and mood problems throughout the first year. Discussion:From a parental perspective on infant HRQoL, extremely preterm infants with higher stress exposure show more problems in the second half-year of life, mainly breathing and possibly mood-related problems. This knowledge may help improve our neonatal care, both during NICU stay and in follow-up clinics, by implementing targeted interventions.
10.3389/fped.2024.1381008
No Place Like Home: Improving the Transition From NICU to Home Through the NICU to Nursery Program.
Advances in neonatal care : official journal of the National Association of Neonatal Nurses
BACKGROUND:Boston Children's Hospital's Level IV Neonatal Intensive Care Unit (NICU) discharges about a third of its medically complex infants home. Parental feedback indicated a need for more education and training in discharge preparation. PURPOSE:The NICU to Nursery (N2N) program was created to better prepare parents to care for their medically complex infants following Level IV NICU discharge. The goals were to (1) mitigate safety risks, (2) assess parent satisfaction, (3) assess pediatric primary care providers' (PCPs') satisfaction, (4) assess community visiting nurses' and PCPs' knowledge deficits, and (5) develop educational materials. METHODS:The N2N program provided parents with pre- and postdischarge assessments with an experienced nurse. Parents completed a survey following assessments to measure satisfaction. To enhance PCPs' knowledge, they were sent summary reports and asked for feedback. PCP feedback, along with a needs assessment of community visiting nurses, guided the development of free Web-based educational videos. RESULTS:One hundred and fifty-five parents participated in the N2N program. Parents' educational needs included medication education, safe sleep, and well-infant care, with some requiring significant nursing interventions for safety risk mitigation. Most PCPs found the home visit reports helpful. Knowledge deficits identified among PCPs and community visiting nurses included management of tubes and drains, growth and nutrition, and emergency response. More than 100,000 providers viewed the 3 Web-based educational videos developed. IMPLICATIONS FOR PRACTICE AND RESEARCH:The N2N program fills a crucial gap in the transition of medically complex infants discharged home. The next steps are developing best practices for virtual in-home assessments.
10.1097/ANC.0000000000001134
Early Parenting Interventions to Enhance Development in Infants and Children Born Prematurely: A Systematic Review and Meta-Analysis.
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
INTRODUCTION:Parenting interventions have the potential to become effective strategies for improving the developmental trajectories of infants and children born prematurely. However, the effectiveness of parenting interventions is not well understood. METHODS:A literature search was conducted in five databases. A total of 24 studies involving 3,636 participants were included for review. RESULTS:The results showed a significant effect in cognition, language, motor development, and behavioral problems of children born prematurely. Parenting stress, anxiety, and interactive behaviors showed significant effect size. DISCUSSION:This review focuses on interventions that employ scaffolding parenting strategies to enhance the development of children born prematurely. Efforts should continue to empower parents through effective and sustainable parenting interventions to improve the quality of life of preterm children.
10.1016/j.pedhc.2024.06.005
Impact of Parent-Targeted eHealth on Parent and Infant Health Outcomes: A Scoping Review.
The Journal of perinatal & neonatal nursing
Improved communication, education, and parental involvement in infant care have been demonstrated to enhance parental well-being and neonatal health outcomes. eHealth has the potential to increase parental presence in the neonatal intensive care unit (NICU). There has been no synthesized review on the direct impact of eHealth use on parental and neonatal health outcomes. The aim of this scoping review is to explore eHealth utilization by families of high-risk newborn infants in the NICU and/or postdischarge on health outcomes. PubMed, CINAHL, and EMBASE were searched from 1980 to October 2015 using key terms for "neonatal," "parents," "eHealth," and "patient education." Criteria of peer-reviewed empirical studies published in English, targeting parents of NICU infants regardless of diagnosis, and eHealth utilization during NICU stay or postdischarge yielded 2218 studies. Extracted data were synthesized using thematic content analysis. Ten studies met inclusion, and 5 themes emerged: usability and feasibility, parental perceived benefits, infant's hospital length of stay, knowledge uptake, and predictors of variations in use. eHealth utilization was found to be desired by parents and promotes positive change in parental experience in the NICU. Actual and perceived benefits of eHealth for parents included ease of use, higher confidence in infant care, satisfaction, and knowledge uptake.
10.1097/JPN.0000000000000265
Early intervention program for very low birth weight preterm infants and their parents: a study protocol.
BMC pediatrics
BACKGROUND:Preterm infants are high risk for delayed neurodevelopment. The main goal is to develop a program of early intervention for very preterm infants that allows families to apply it continuously at home, and quantify the results of early parental stimulation on improvement of cognition and motor skills. METHODS:Randomized clinical Trial including inborn preterm infants with gestational age less than 32 weeks or birth weight less than 1500 g at 48 h after birth. Eligible for begin the intervention up to 7 days after birth. Study Protocol approved by the Brazilian national Committee of ethics in Research and by the institutional ethics committee. Intervention group (IG): skin-to skin care by mother (kangaroo care) plus tactile-kinesthetic stimulation by mothers from randomization until hospital discharge when they receive a program of early intervention with 10 parents' orientation and a total of 10 home visits independently of the standard evaluation and care that will be performed. Systematic early intervention program will be according to developmental milestones, anticipating in a month evolutionary step acquisition of motor and / or cognitive expected for corrected age. Active comparator with a Conventional Group (CG): standard care according to the routine care of the NICU and their needs in the follow up program. Neurodevelopment outcome with blinded evaluations in both groups between 12 and 18 months by Bayley Scales of Infant and Toddler Development third edition and Alberta Motor Infant scale will be performed. All evaluations will be conducted in the presence of parents or caregivers in a safe room for the child move around during the evaluation. DISCUSSION:If we can show that a continuous and global early intervention at home performed by low income families is better than the standard care for very preterm infants, this kind of program may be applied elsewhere in the world. We received grants by Bill and Melinda Gates Foundation, DECIT, Cnpq and Health Ministry. Grand Challenges Brazil: All Children Thriving. TRIAL REGISTRATION:The study was restrospectively registered in ClinicalTrials.gov . in July 15 2016 ( NCT02835612 ).
10.1186/s12887-018-1240-6
Effects of parent-provider communication during infant hospitalization in the NICU on parents: A systematic review with meta-synthesis and narrative synthesis.
Labrie Nanon H M,van Veenendaal Nicole R,Ludolph Ramona A,Ket Johannes C F,van der Schoor Sophie R D,van Kempen Anne A M W
Patient education and counseling
OBJECTIVE:To 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. METHODS:Systematic 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. RESULTS:5586 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. CONCLUSIONS:Parent-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.
10.1016/j.pec.2021.04.023
Socio-family support for parents of technology-dependent extremely preterm infants after hospital discharge.
Journal of child health care : for professionals working with children in the hospital and community
Parents of extremely preterm infants (<28 weeks of gestation) report high levels of stress and anxiety related to daily needs after hospital discharge. Social support has a significant role in reducing the negative psychological impact of preterm birth and parents' adaptation to caregiving. We conducted a hermeneutic phenomenological study using Gadamer's approach to explore and describe the experiences of parents of technology-dependent extremely preterm infants of socio-family support after hospital discharge. The study was conducted in four several Spanish organizations for families with preterm infants. It includes 17 semi-structured interviews (12 mothers and 5 fathers). Three main themes emerged from the analysis: post-discharge formal support for extremely preterm infants and families, home neonatal care: family support, and a thread of hope: parent-to-parent support. The parents' main support resources to deal with everyday difficulties are healthcare professionals, their partners, grandmothers, and peer parents of extremely preterm infants. The findings may be used to guide healthcare professionals in the creation of a support program according to preferences and needs of parents.
10.1177/1367493521996490
Engaging and supporting families in the Neonatal intensive care unit with telehealth platforms.
Ranu Jaskiran,Sauers-Ford Hadley,Hoffman Kristin
Seminars in perinatology
The utilization of telehealth in the Neonatal Intensive Care Unit (NICU) has the potential to better support families during their infant's time in the hospital. Due to the stressful nature of a NICU admission, parents are at increased risk for anxiety. The expanding use of web camera and videoconferencing technologies will allow families to bond and connect with their infant through remote baby viewing. These technologies are also in place during their hospitalization and allow families the opportunity to connect directly with their care team to build trusting relationships and work on a mutual care plan. Telehealth platforms can continue to aid families post discharge to ensure that transition of care to their child's primary care provider is seamless. With telehealth programs taking root in multiple, longitudinal aspects of NICU care, the hope is to promote the foundations of patient and family-centered care and provide our families with the support they deserve.
10.1016/j.semperi.2021.151426
Parents' information needs during the first year at home with their very premature born child; a qualitative study.
PEC innovation
Objective:To obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant. Methods:We conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews were audiotaped and transcribed verbatim. Inductive thematic analysis was performed by two independent coders. Results:Ten participants were interviewed and had various and changing information needs during the developmental trajectory of their infant. Three main themes emerged; (1) Help me understand and cope, (2) Be fully responsible for my baby, and (3) Teach me to do it myself. Available and used sources, such as the Internet, did not meet their information needs. Participants preferred their available and knowledgeable healthcare professionals for reassurance, tailored information, and practical guidance. Conclusion:This study identified parents' information needs during the first year at home with their VP infant and uncovered underlying re-appearing needs to gain confidence in child-caring abilities and autonomy in decision-making about their infants' care. Innovation:This study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.
10.1016/j.pecinn.2024.100270
Psychological or educational eHealth interventions on depression, anxiety or stress following preterm birth: a systematic review.
Feng Yu Yang,Korale-Liyanage Sugee,Jarde Alexander,McDonald Sarah D
Journal of reproductive and infant psychology
: To determine the efficacy and characteristics of psychological or educational eHealth interventions on reducing symptoms of mental illness in parents of preterm or low birthweight infants. : Many parents suffer psychological disorders after preterm birth. Computer or mobile application-based interventions are a promising alternative. : We searched seven electronic databases up to January 2020 and included randomised and quasi-randomised controlled trials assessing psychological or educational eHealth interventions in parents of infants born very preterm <32 weeks or with very low birthweight <1500g (primary question), or preterm <37 weeks or with low birthweight <2500g (secondary question). Primary outcomes were measures of depression, anxiety, acute stress disorder or post-traumatic stress disorder. Secondary outcomes included other indicators of mental health, quality of life and intervention characteristics. We had planned random-effects meta-analysis in our protocol (CRD42018105731). : Of 9768 records, no study reported our primary outcomes. Three studies showed potential benefits for parental self-efficacy, discharge preparedness, parental satisfaction and family satisfaction with the neonatal intensive care unit. : We found scarce evidence on the efficacy of psychological or educational eHealth interventions on reducing mental illness in parents of preterm or low birthweight infants, highlighting the need for more research.
10.1080/02646838.2020.1750576
Multicentre randomised study of the effect and experience of an early inhome programme (PreHomeCare) for preterm infants using video consultation and smartphone applications compared with inhospital consultations: protocol of the PreHomeCare study.
Hägi-Pedersen Mai-Britt,Norlyk Annelise,Dessau Ram,Stanchev Hristo,Kronborg Hanne
BMJ open
INTRODUCTION:Although premature infants and their parents are discharged earlier to inhomecare programmes, how to optimally support parents during this transition remains unknown. The aim of this study is to compare the effects of early inhomecare (PreHomeCare) including video consultations and mobile applications with those of inhospital consultations regarding breast feeding, parental confidence and parent-infant interactions. METHODS AND ANALYSIS:A randomised controlled intervention study will be conducted in four neonatal departments offering PreHomeCare (ie, premature infant inhomecare) in Denmark. Parents of hospitalised premature infants who fulfil the inclusion criteria for PreHomeCare will be randomised during hospitalisation to either the intervention (n=80) or control group (n=80) using 1:1 block randomisation. During PreHomeCare, the intervention group will receive a smartphone application with a video system and an infant scale, and the control group will receive usual care (ie, hospital consultations). Additionally, both groups will have planned nurse consultations two to three times a week: the intervention group through video consultations and the control group through inhospital consultations. Data collection will occur at inclusion/baseline, at the end of PreHomeCare and 1 month after discharge using questionnaires and hospital records. The primary outcome is the proportion of exclusively breastfed infants 1 month after discharge/end of PreHomeCare, the secondary outcomes are parent-infant interactions measured by the Mother and baby interaction scale and family confidence in caring for infants measured by the Karitane Parenting Confidence Scale. The process evaluation will consist of two qualitative studies: a field study and an interview study. Data collection will initially involve field observations of three scheduled video consultations with six families from the intervention group. These families will also be interviewed 1 month after PreHomeCare has ended. ETHICS AND DISSEMINATION:The project has been approved by the Regional Ethics Committee and the Danish Data Protection Agency. TRIAL REGISTRATION NUMBER:NCT02581800.
10.1136/bmjopen-2016-013024
Telehealth experiences of mothers of hospitalized and discharged preterm infants in Islamic Republic of Iran.
Eastern Mediterranean health journal = La revue de sante de la Mediterranee orientale = al-Majallah al-sihhiyah li-sharq al-mutawassit
Background:The transition to telehealth services for mothers of preterm babies is a challenge in promoting the health of preterm infants, although telehealth allows real-time interaction and support for mothers. Aim:To compare the experiences of mothers of hospitalized and discharged preterm infants with telehealth services in the Islamic Republic of Iran. Methods:This qualitative study was conducted from June to October 2021 using a conventional content analysis approach. The study participants included 35 hospitalized and 35 discharged mothers of preterm infants, who received healthcare consultations through WhatsApp and Telegram applications. They were selected using purposive sampling. Data collection was done using in-depth semi-structured interviews and data analysis was performed using Graneheim and Lundman analysis. Results:Our findings showed request for continuing healthcare support by the mothers as the main category, with 3 subcategories: willingness to connect to telehealth services, more comprehensive education about telehealth services, and opportunities to share experiences. Mothers of hospitalized and discharged preterm infants had conflicting views about the ambiguous role of nurses in telehealth and the use of telehealth as a support system. Conclusion:Telehealth plays an important role as a supportive method in promoting infant health and boosting the confidence of mothers of preterm infants as they continuously interact with nurses.
10.26719/emhj.23.055
Effectiveness of early interventions for parental sensitivity following preterm birth: a systematic review protocol.
Lavallée Andréane,Aita Marilyn,Bourbonnais Anne,De Clifford-Faugère Gwenaëlle
Systematic reviews
BACKGROUND:Parental sensitivity is the interaction process by which parents (a) recognize cues from their infant, (b) interpret these cues adequately, (c) identify an appropriate response and (d) apply this response in an appropriate time frame. In the neonatal intensive care unit, parents of preterm infants often encounter factors hampering the establishment of their parental sensitivity. Parents report the need to be in proximity to and to participate in their preterm infant's care in order to develop their sensitivity to their newborn infant. To do so, the effectiveness of interventions promoting their parental sensitivity has been evaluated with randomized controlled trials. The purpose of this systematic review is to evaluate the effectiveness of early interventions promoting parental sensitivity of preterm infants' parents. METHODS/DESIGN:A search will be done in the following databases: CINAHL, PubMed in addition to Medline, Embase, PsycInfo, Web of Science, Scopus and ProQuest. No restriction for the years of publication will be considered. Two experts will be conducting independently each step of the review. All studies of randomized controlled trials of early interventions, for parents of preterm infants, implemented in the neonatal intensive care unit before the infant has reached 37 weeks of corrected gestational age, will be considered eligible. Primary outcome is parental sensitivity. Depending on the availability and quality of data, a meta-analysis will be done. Alternatively, a qualitative synthesis of data is planned. The systematic review follows the PRISMA recommendations. Finally, risk of bias and quality of the evidence of included studies will be assessed. DISCUSSION:To our knowledge, this will be the first systematic review to examine the effect of early interventions that promote parental sensitivity of parents of preterm infants in the neonatal intensive care unit. The results of this review will guide development of best practice guidelines and recommendations for further research and will have implications for neonatal clinical practice. SYSTEMATIC REVIEW REGISTRATION:PROSPERO CRD42016047083.
10.1186/s13643-017-0459-x
Parent Support Programs and Coping Mechanisms in NICU Parents.
Huenink Ellen,Porterfield Susan
Advances in neonatal care : official journal of the National Association of Neonatal Nurses
BACKGROUND:Many neonatal intensive care unit (NICU) parents experience emotional distress leading to adverse infant outcomes. Parents may not cope positively in stressful situations, and support programs often are underutilized. PURPOSE:To determine coping mechanisms utilized by NICU parents, and types of support programs parents are likely to attend. To determine whether sociodemographic and length-of-stay differences impact coping mechanisms utilized, and types of support programs preferred. METHODS:A correlational cross-sectional survey design was used. The 28-item Brief COPE tool, questions about demographics and preferred support program styles, was distributed to a convenience sample of NICU parents in a level IV NICU in the southeastern United States. RESULTS:One hundred one NICU parents used coping mechanisms, with acceptance emotional support, active coping, positive reframing, religion, planning, and instrumental support being the most common. Preferred support classes were infant development and talking with other NICU parents. Caucasians more commonly coped using active coping, planning, emotional support, acceptance, instrumental support, and venting compared with other races. Women utilized self-blame coping mechanisms more often compared with men. Younger parents were more likely to use venting and denial coping mechanisms. Parents with a shorter stay utilized self-distraction coping and preferred the class of talking with other parents. IMPLICATIONS FOR PRACTICE:Support program preference, type of coping mechanism utilized, and sociodemographic factors may be used to guide the creation of NICU support programs. IMPLICATIONS FOR RESEARCH:Additional studies are needed to determine whether support program offering according to preferences and sociodemographic characteristics increases attendance and decreases emotional distress.
10.1097/ANC.0000000000000359
Transition from the neonatal unit to home: Parents' educational needs to promote their psychological well-being and sleep quality.
Journal of pediatric nursing
PURPOSE:Parents may experience altered psychological well-being and sleep following the discharge of their preterm infant. They also perceive a lack of information from healthcare professionals. This study aims to describe the educational needs of parents regarding their psychological well-being and their sleep quality following their infant's discharge from the neonatal unit. DESIGN AND METHODS:This descriptive quantitative study uses an online survey to assess parental information needs. Multiple parents (n = 87) completed the survey. Descriptive statistics were conducted to report the results of the survey. RESULTS:According to parents, the most helpful information given by health professionals to reduce the stress felt during this period concerned the follow-up of the infant after hospitalization and access to a health professional in case of questions (n = 12; 31.6%). Few parents (n = 17; 19.5%) reported seeing a health professional about their sleep in the past six months. According to 54.8% of parents, none of the information received by health professionals when preparing for their infant's transition home helped improve their sleep quality. CONCLUSION:After discharge, parents have several information needs that may impact their psychological well-being and the quality of their sleep. PRACTICE IMPLICATIONS:Healthcare professionals must address these informational needs before and after discharge from the neonatal unit to enhance the experience of parents during the transition of their preterm infant in the family environment.
10.1016/j.pedn.2024.07.024
eHealth early intervention programs to support premature parents transitioning from NICU to home on parental and infant outcomes: a systematic review protocol.
JBI evidence synthesis
OBJECTIVE:This review will assess the effectiveness of eHealth early intervention programs in supporting premature infants and their parents transition from neonatal intensive care units (NICUs) to home and the impact of such programs on parental and infant outcomes. INTRODUCTION:The literature has shown the benefits of eHealth early intervention programs to support premature infants and their parents after discharge from NICUs. Parents have reported benefits such as enhanced user-friendliness, increased confidence in infant care, satisfaction, and knowledge acquisition. However, the effectiveness of these programs on parental and infant outcomes remains unclear. INCLUSION CRITERIA:This review will consider studies that assess any early intervention program using eHealth to support premature infants and their parents after discharge from NICU. The programs may be initiated during hospitalization or within the first month of discharge. The programs will include interventions that use eHealth components (eg, teleconsultation), either alone or in combination with face-to-face interventions (eg, home visits). This review will consider parental outcomes, including stress, anxiety, competence, and satisfaction, as well as infant outcomes, including health service utilization and cognitive, motor, and social development. METHODS:This review will follow the JBI methodology for systematic reviews of effectiveness. The search strategy will aim to find both published and unpublished quantitative studies in English, Spanish, and Portuguese, without any geographical or cultural limitations. Two reviewers will independently perform study selection, critical appraisal, and data extraction. The results will be accompanied by a narrative synthesis. If possible, a meta-analysis will be conducted and the Summary of Findings will be presented using the GRADE (Grading of Recommendations Assessment, Development and Evaluation) approach. REVIEW REGISTRATION:PROSPERO CRD42023444721.
10.11124/JBIES-23-00422
Stakeholder Perceptions of Digital Nutrition Education Modules on Infant Feeding in Home Visiting Programs.
Journal of nutrition education and behavior
OBJECTIVE:Evaluate the usability and acceptability of a digital infant feeding module for use in a home visiting program. METHODS:Home visitors (n = 11) and mothers (n = 10) completed a qualitative interview while viewing a digital nutrition education module on infant feeding. Quantitative data were collected using the mHealth App Usability Questionnaire. Qualitative data were analyzed using inductive thematic analysis. RESULTS:Most participants (90%) reported that they would very likely use the module as part of home visits. mHealth App Usability Questionnaire subscale scores supported usability on a scale of 0-7 with ease of use (6.9 ± 0.40), interface and satisfaction (6.9 ± 0.30), and usefulness (6.8 ± 0.50). Barriers to usability included technology access and phone compatibility. CONCLUSIONS AND IMPLICATIONS:The digital infant feeding module was deemed usable and acceptable by home visiting stakeholders. Future research is needed to determine the impact of brief digital educational modules on parental feeding behaviors and child health outcomes.
10.1016/j.jneb.2024.12.008
Qualitative analysis of mothers' perception related to the delivery of information regarding preterm births.
BMC pregnancy and childbirth
BACKGROUND:Preterm birth is a major health issue due to its potential outcomes and socioeconomic impact. Prenatal counseling is of major importance for parents because it is believed that the risk of preterm birth is associated with a higher parental mental burden. Nowadays in France, the content and delivery of antenatal counseling is based on personal experience since there is a lack of official guidelines. The goal of the study was to evaluate maternal perception of antenatal information delivered in the setting of preterm births. METHODS:A qualitative study was performed using semi-structured individual interviews of 15 mothers with a child born > 26-34 GW. Data analysis was based on a constant comparative method. RESULTS:Concerning prenatal counseling content, parents wanted to be informed of their role in the care of their preterm child more so than statistics that were not always considered relevant. Parents' reactions to the announcement of the risk of a preterm birth was dominated by stupefaction, uncertainty and anxiety. When it comes to the setting of prenatal counseling, patients' room was deemed an appropriate setting by parents and ideally the presence of a coparent was appreciated as it increased patients' understanding. The physicians' attitude during the counseling was considered appropriate and described as empathic and optimistic. The importance of support throughout the hospitalization in the form of other parents' experiences, healthcare professionals and the possibility to preemptively visit the NICU was emphasized by participants. Delivery experience was dominated by a sense of uncertainty, and urgency. Some leads for improvement included additional support of information such as virtual NICU visit; participants also insisted on continuity of care and the multidisciplinary aspect of counseling (obstetrician, neonatologist, midwife, nurse, lactation consultant and psychologist). CONCLUSION:Highlighting parents' expectations about prenatal counseling could lead to the establishment of overall general guidelines. However, some topics like the use of statistics and mentioning the risk of death underline the importance of a personalized information.
10.1186/s12884-024-06404-3
Clinical relevance of activities meaningful to parents of preterm infants with very low birth weight: A focus group study.
Dür Mona,Brückner Victoria,Oberleitner-Leeb Christiane,Fuiko Renate,Matter Barbara,Berger Angelika
PloS one
INTRODUCTION:Parents have a major impact on the outcome of health care of preterm infants. Parents' engagement in meaningful activities could have an impact on their own health and wellbeing and therefore be relevant in neonatal intensive care. The aim of this study was to explore meaningful activities of parents of very low birth weight (VLBW) preterm infants with the purpose to further the understanding of their clinical relevance and to foster their consideration in clinical practice and research of neonatal intensive care. METHODS:A total of 36 parents of preterm infants born prior to complete 37 weeks of gestation with VLBW (≤1.500 grams) were asked to participate in a focus group interview. Interview transcripts were used to analyse the content of the focus group interviews using meaning condensation method by Steinar Kvale. RESULTS:Thirty-six parents participated in a total of twelve focus groups. Parents reported that the meaning of certain activities changed due to preterm birth. Meaningful activities, like bathing the baby and gardening, could foster a transition from a feeling of parental immaturity to a feeling of maturity, following health care instructions to possessing health care skills, and a functioning-only state to a balance of activities. CONCLUSIONS:In neonatal intensive care, nurses contribute to delivering parental education and thereby facilitate experiences of being a mature parent and of possessing health care skills. Occupational therapy could be used to help re-engage in meaningful activities and maintain a balance of activities in parents of VLBW preterm infants.
10.1371/journal.pone.0202189
Experiences and coping strategies of preterm infants' parents and parental competences after early physiotherapy intervention: qualitative study.
Physiotherapy theory and practice
BACKGROUND:Birth before term is a stressful experience for parents because of the unexpected delivery or admission to the neonatal intensive care unit. OBJECTIVE:This research aimed to evaluate the impact of the early PT intervention on preterm infants' parents' experiences, and also to obtain knowledge about parents' experiences and perceived difficulties during preterm infants' care. METHODS:This qualitative study is based on the methods of phenomenology. In the first phase, open interviews were developed to allow researchers to immerse themselves in the context of the study and refine the questions for the semi-structured interviews. Data collected from the semi-structured interviews were analyzed through content analysis. RESULTS:The results were summarized around three themes: 1) parental competence; 2) difficulties during preterm infants' care; and 3) coping strategies. Each theme was divided into two sub-themes. CONCLUSION:Mothers and fathers of preterm infants experienced difficulties when caring for their babies. Parents that received the early physiotherapy intervention felt empowered to take care of their babies and to enhance infants' development. These parents were more capable of developing coping strategies after the intervention. Parents that did not receive the early physiotherapy intervention expressed difficulties when caring for their preterm babies.
10.1080/09593985.2020.1818339
Parental sense of competence, paternal stress and perceived construction of the relationship with the premature newborn: A mixed method study.
Early human development
OBJECTIVE:The aim of this study is to investigate the parental sense of competence, the paternal stress and the perceived construction of the relationship with the infant of during the hospitalization in a neonatal intensive care unit. METHODS:Forty-eight French fathers of premature infants participated in this study, which took place in the Toulouse University Hospital in France. Mixed methods are used, a semi-structured interview and two self-reported questionnaires. RESULTS:Main results show that fathers perceive the construction of the first relationship with their infant through the skin-to-skin and eye contact, along with their immediate presence by their child. The physical contact, although it may induce more stress, it motivates the father to be more involved in the caregiving process. Child's fragile appearance generates more stress to fathers. Finally, the stress linked to the construction of their relationship with the infant will affect their parental sense of competence. CONCLUSION:Results are discussed with respect to recent literature and ways to improve professional practice are proposed.
10.1016/j.earlhumdev.2022.105576
How to support fathers of preterm infants in early parenthood - An integrative review.
Journal of pediatric nursing
PROBLEM:Preterm birth is a stressful event. Paternal experiences of having a preterm infant indicate a need for tailored support. However, it is unclear which interventions work best. This review presents the evidence on existing healthcare interventions to support fathers of preterm infants in early parenthood, how effective they are and paternal experiences with the interventions. ELIGIBILITY CRITERIA:The integrative review process of Whittemore and Knafl was used to guide the study. A structured and comprehensive literature search was conducted in PubMed (MEDLINE), Embase, CINAHL, PsycInfo, Cochrane, Scopus, Web of Science, SweMed+, and Proquest Dissertation & Thesis Global. SAMPLE:A total of 18 qualitative and quantitative studies were included in the review. The Mixed Methods Appraisal Tool was used to assess quality. RESULTS:Three overall themes were identified in the analysis: 1) Skin-to-skin contact supported interaction between infant and father, 2) information impacted paternal experiences of stress, anxiety, and development of fatherhood, 3) fathers' relationships with the nurses oscillated between conflict and assistance. CONCLUSIONS:Our findings show that targeted interventions could support father-infant interaction and reduce stress among fathers of preterm infants. IMPLICATIONS:Fathers of preterm infants rely on nurses to support their engagement in early parenthood, while nurses facilitate the interventions that engage the fathers. It is also essential to develop a culture within the neonatal intensive care unit that encourages the presence of fathers and enhances educational nursing strategies for supporting fathers of preterm infants during early parenthood.
10.1016/j.pedn.2022.10.001
Parental stress and mental health outcomes following very preterm birth: A systematic review of recent findings.
Journal of affective disorders
BACKGROUND:In recent years, there has been a wide array of research studies published on parental mental health and stress following very preterm birth. This review aims at reviewing the prevalence and risk factors of long-term parental depression, anxiety, post-traumatic stress symptoms and parenting stress following very preterm birth. METHODS:We searched PubMed, PsychINFO and Web of Science for descriptive, cross-sectional and longitudinal studies published between January 2013 and August 2022. RESULTS:45 studies met our inclusion criteria. In the first two years, depression, anxiety, post-traumatic stress symptoms and parenting stress were present in ∼20 % of mothers of extreme and very low birth weight (E/VLBW) infants. Long-term psychological distress symptoms could be observed, although few studies have focused on symptoms into school age and longer. Fathers of VLBW infants might experience more psychological distress as well, however, they were only included in ten studies. We found that parental distress is more common when the co-parent is struggling with mental health symptoms. Many risk factors were identified such as social risk, history of mental illness, interpersonal factors (i.e. social support) and child-related factors (i.e. intraventricular hemorrhage, disability, use of medical equipment at home). LIMITATIONS:Several studies have methodological issues, such as a lack of control of known confounders and there is a large variety of measures employed. CONCLUSION:Important risk factors for stress and mental health symptoms were identified. More evidence is needed to determine if long-term symptoms persist into school age. Research should focus on taking a family-based approach in order to identify preventive strategies and resilience factors in parents of VLBW infants.
10.1016/j.jad.2024.03.154
Potential differences in occurrence of preterm births according to quality of relationship between mothers and fathers of the children.
Central European journal of public health
OBJECTIVES:Premature birth is a serious pregnancy complication that is affected by many biological as well as psychosocial factors. Several studies have shown that a mother's positive relationship with her child's father reduces the mother's stress, anxiety and depression during pregnancy, promotes a healthier mother's lifestyle and thus has a positive effect on pregnancy as such. This research was therefore aimed at identifying possible differences in the incidence of premature births in mothers depending on the quality of the relationship with the father of their child. METHODS:The research involved 210 mothers after childbirth in the period from October 2020 to September 2021. A questionnaire aimed at obtaining descriptive data about the mother and her child and a questionnaire aimed at determining the quality of the relationship - Quality of Relationship Inventory (QRI) were distributed. Mann-Whitney U tests were used to determine differences between groups. RESULTS:Of 210 children, 44 (21%) were born prematurely, 154 (73.3%) mothers were married and 176 (83.8%) lived with the father of their child in the same household. The results showed that the degree of quality of the mother's relationship with the child's father is approximately the same for mothers who gave birth prematurely and for those who gave birth at term, so there were no differences in this factor between the two groups of mothers. CONCLUSION:The results of other researchers have shown the positive impact of partners on pregnancy and the overall well-being of the mothers. However, our research has not confirmed the positive effect of the quality of the relationship between mother and father of her child on reducing the incidence of premature births. Further research is needed to clarify how specifically and whether the quality of the relationship between parents can affect the incidence of premature births at all.
10.21101/cejph.a7242
Knowledge of mothers and fathers' experiences of the early in-home care of premature infants supported by video consultations with a neonatal nurse.
Hägi-Pedersen Mai-Britt,Kronborg Hanne,Norlyk Annelise
BMC nursing
AIM:To gain in-depth knowledge of mothers' and fathers' experiences of the whole trajectory of an early in-home care programme supported by video consultations with a neonatal nurse. DESIGN:A qualitative interview study. METHODS:Data were collected through dyadic semi-structured interviews with mothers and fathers participating in virtual early in-home care programmes and were subjected to inductive content analysis. FINDINGS:The mothers and fathers were anxious about mastering the care of their premature infants at the start of the early in-home care phase but gradually developed confidence by the completion of the early in-home care programme. Being at home during the early in-home care programme gave the mothers and fathers an opportunity to test their decision making concerning the care of the infant while having the ability to obtain support from nurses when needed. CONCLUSION:Our findings indicate that the trajectory of early in-home care programmes combined with video consultations contributes to parents' increased confidence as mothers and fathers. TRIAL REGISTRATION:Clinical trial registration: REG-113-2014 and SJ-431 .
10.1186/s12912-021-00572-9
Mother's level of confidence in caring for her late preterm infant: A mixed methods study.
Premji Shahirose S,Pana Gianella,Currie Genevieve,Dosani Aliyah,Reilly Sandra,Young Marilyn,Hall Marc,Williamson Tyler,Lodha Abhay K
Journal of clinical nursing
AIM AND OBJECTIVES:To examine what it means to be a mother of a late preterm infant including a mother's level of confidence in caring for her late preterm infant over time and the effect of maternal depression of this experience. BACKGROUND:Little is known about mothers' experiences of caring for their late preterm infants in the community, including their level of confidence and parenting stress within the context of a supported care environment by public health nurses. DESIGN:A mixed methods study, sequential explanatory quantitative and qualitative study. METHODS:A convenience sample of mothers with LPIs (n = 71) completed questionnaires on maternal confidence (3-4 weeks and 6-8 weeks), parenting stress (6-8 weeks), social support (6-8 weeks) and postpartum depression (6-8 weeks). A purposive sample of mothers (n = 11) underwent in-depth, semi-structured interviews. RESULTS:Maternal confidence decreased from 3-4 weeks-6-8 weeks after delivery, and similar results were found for mothers who reported depressive symptoms. Narratives of the mothers suggested the decrease in maternal confidence over time was influenced by the demanding characteristics of the late preterm infant, the prospect of their rehospitalisation and the mother's reported interactions with public health nurses. Depression had an effect on maternal confidence; that is, the depressed mothers demonstrated less confidence about their caretaking role than the nondepressed mothers at 6-8 weeks. Mothers did not discuss mental health issues, which may reflect the protective effects of social support on emotional instability or an inability to recognise postpartum depression. CONCLUSION:The confidence of mothers with LPIs decreased over the first 2 months following delivery and being home with their infants. Assisting mothers to meet their personal needs and the needs of their infant should promote maternal skills, which will likely increase maternal confidence related to the care of their late preterm infant. RELEVANCE FOR CLINICAL PRACTICE:Characteristics of LPIs contributed more to parenting stress score than parent characteristics; mothers however attempted to normalise the late preterm infant in order to minimise the parenting stress. Evidence-informed brief interventions tailored based on late preterm infant and parent characteristics may improve maternal confidence over time. Healthcare professional should provide education and anticipatory guidance prior to discharge, consistent care in hospital and postdischarge as this may impact maternal level of confidence. Future research needs to examine standards of care for discharge of LPIs and adherence to these standards.
10.1111/jocn.14190
Parental anxiety regarding premature infants and factors affecting parental concern.
Lee Ju Yun,Lee Jung Hyun,Yeon Gyu Min,Jung Yu Jin
Journal for specialists in pediatric nursing : JSPN
PURPOSE:Premature births have a great impact on the parents. The purpose of this study was to investigate the anxieties of parents of premature infants regarding infantile diseases and to help medical staff better communicate with parents of premature infants. DESIGN AND METHODS:This study included premature infants <37 weeks of age who were admitted to the Neonatal Intensive Care Unit of Kosin University Gospel Hospital between August 1, 2017, and December 31, 2017. The eligible subjects included 51 premature infants with their 75 parents (45 mothers and 30 fathers) listed in the children's medical records. Parental anxieties regarding the infants were determined by retrospective interviews at various time points as follows: before and after the birth, on postnatal Days 3 and 7, before discharge, in the first week after discharge, and at "whenever" time point. RESULTS:The highest parental anxiety during all time points was regarding the respiratory system of the premature infants. Parental concerns regarding the metabolic-endocrine system of their infants significantly correlated with the presence of maternal diabetes mellitus. Parental anxiety significantly differed depending on the use of resuscitation after birth. A statistically significant difference in parental anxiety was observed in relation to the birth weight before discharge. The premature infants with bronchopulmonary dysplasia showed a significant difference in the level of parental anxiety concerning the infant's illness in the first week after discharge. CONCLUSIONS:The parents of the premature infants were greatly concerned about their infants' respiratory system. Careful prenatal counseling and support are needed for mothers with diabetes.
10.1111/jspn.12266
Perceived Needs of Parents of Premature Infants in NICU.
Wang Li,He Jun Li,Fei Shu Lan
Western journal of nursing research
To investigate the needs of parents of premature infants hospitalized in a neonatal intensive care unit (NICU) and explore associated factors. This study includes a convenience sample of 198 parents of premature infants hospitalized in a NICU in Chenzhou, Hunan province, China. Parents completed a study-specific questionnaire and the Chinese version of Critical Care Family Need Inventory (CCFNI). Analysis was conducted by multiple linear regression. Parents rated 30 of 45 items on the Chinese version of the CCFNI as important or very important. Items on the assurance, information, and proximity subscales were perceived as the most important, while items on the comfort subscale were the least important. Gender of parents and experience of visiting a NICU were significantly associated with the total needs of the parents. These insights should be used to inform clinical practice in the NICU.
10.1177/0193945916683679
Mental Health Trajectories of Fathers Following Very Preterm Birth: Associations With Parenting.
McMahon Grace E,Anderson Peter J,Giallo Rebecca,Pace Carmen C,Cheong Jeanie L,Doyle Lex W,Spittle Alicia J,Spencer-Smith Megan M,Treyvaud Karli
Journal of pediatric psychology
OBJECTIVE:Mothers of infants born very preterm (VPT) are at high risk of mental health difficulties. However, less is known about the course of fathers' depressive and anxiety symptoms over time, and the implications this may have for early parenting behaviors. METHODS:In total, 100 fathers of 125 infants born VPT (<30 weeks' gestation) completed questionnaires assessing depressive and anxiety symptoms shortly after their infant's birth, and when their infant reached term-equivalent age, 3 months, 6 months, and 12 months' corrected age. At 12 months' corrected age, fathers' parenting behaviors were assessed using the Emotional Availability Scales. Longitudinal latent class analysis was used to identify trajectories of fathers' depressive and anxiety symptoms, and linear regression equations examined relationships between these trajectories and fathers' parenting behaviors. RESULTS:For both depressive and anxiety symptoms, two distinct trajectories were identified. For depression, most fathers were assigned to the persistently low symptom trajectory (82%), while the remainder were assigned to the persistently high symptom trajectory (18%). For anxiety, 49% of fathers were assigned to the persistently low symptom trajectory, while 51% were assigned to the trajectory characterized by moderate symptoms over the first postnatal year. There were no significant differences in parenting behaviors between fathers assigned to the different depressive and anxiety symptom trajectories. CONCLUSIONS:Fathers of infants born VPT are at risk of chronic depressive and anxiety symptoms over the first postnatal year, highlighting the need for screening and ongoing support.
10.1093/jpepsy/jsaa041
Needs of parents of very preterm infants in Neonatal Intensive Care Units: A mixed methods study.
Amorim Mariana,Alves Elisabete,Kelly-Irving Michelle,Silva Susana
Intensive & critical care nursing
OBJECTIVES:To explore needs of parents of very preterm infants hospitalised in Neonatal Intensive Care Units according to their socioeconomic position, obstetric history and infant's characteristics. METHODOLOGY:Sequential explanatory mixed methods study. Individual quantitative questionnaires (n = 118 mothers; 89 fathers) during infants' hospitalisation; couples-based semi-structured interviews (n = 26) four months after childbirth (July 2013-June 2014). SETTING:All level III public neonatal intensive care units in North Portugal. RESULTS:Mothers valued more information needs than fathers and their overall scores were mainly influenced by age and educational level, while fathers' needs perceptions were influenced by previous children. Despite gender differences, the assurance and proximity needs of parents apply across sociotechnical environments. Qualitative findings added the following needs: instrumental support from the government; regular emotional support from psychologists and social workers; enhancement of privacy to assure family-centred information and comfort; and availability of peers and health professionals as mediators in the provision of coherent information. CONCLUSIONS:The promotion of family-friendly and gender-equality policies is crucial to support family integrated healthcare services. This study raises awareness for developing sensitive conceptual frameworks and instruments to assess parents' needs considering their socioeconomic position and reproductive trajectories, as well as privacy and regular emotional support in the neonatal intensive care unit.
10.1016/j.iccn.2019.05.003
Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad.
Acta paediatrica (Oslo, Norway : 1992)
AIM:To describe parental perspective on health and developmental outcomes of their preterm child in relation to level of neurodevelopmental impairment (NDI). METHODS:A parental survey about their children aged 15-36 months corrected age born ˂29 weeks' gestation investigated parental concerns and positive attributes. Parental responses in relation to their child's level of NDI were examined using Kruskal-Wallis and chi-square for trend tests. RESULTS:One hundred ninety-nine parental responses were obtained for 163 children, including 44% with NDI. Vast majority of parents reported their children were developing well with good physical health. All parents, irrespective of NDI, reported their children were happy and had a positive personality. Appreciation of social interactions was higher for parents of children without versus with NDI (96% vs. 87%, p = 0.039). Parents of children with NDI were more likely to express concerns than those without NDI. Overall, development was the most common area of concern (45%), followed by the child's future (40%) and physical health (35%). CONCLUSION:Parents of preterm children report many positive points and concerns, some of which are not examined in neonatal follow-up data. These parental perspectives could be used to inform parents of preterm infants, both antenatally and in the neonatal unit.
10.1111/apa.16616
Being parents of extremely preterm children, from a long-term perspective: A qualitative study of parents' experiences.
Early human development
BACKGROUND:In recent decades, modern neonatal intensive care has improved, increasing the survival of extremely preterm children. Few studies have examined the experiences of parents of extremely preterm children from a long-term perspective. AIM:To describe parents' experiences of parenting extremely preterm children during their childhood and transition to adulthood. STUDY DESIGN:A qualitative interview study with a descriptive design. SUBJECTS:Thirteen parents of eleven children born at 24 gestational weeks in Sweden, 1990-1992, participated in individual semi-structured interviews. OUTCOME MEASURES:Data were analyzed using qualitative reflexive thematic analysis. RESULT:Five themes forming a timeline were created in the analytic process: parenthood, at the NICU, young childhood, adolescence, and adulthood. Various aspects affecting parenthood were described throughout the timeline, and occasionally the parents experienced difficulties dealing with their children's special physical and/or mental needs. Today, some families have established a functioning situation despite their children's physical and/or mental difficulties, while some still struggle with their children's everyday life. CONCLUSION:Having an extremely preterm family member profoundly affects the whole family for various lengths of time. Parents expressed a need for support from both healthcare and school throughout their children's childhood and in their transition to adulthood, although the need varies between parent-child pairs. By studying the parents' experiences, their need for support can be further recognized and understood, and developed and improved accordingly.
10.1016/j.earlhumdev.2023.105819
Paternal involvement and support and risk of preterm birth: findings from the Boston birth cohort.
Journal of psychosomatic obstetrics and gynaecology
OBJECTIVE:To investigate to what extent paternal involvement and support during pregnancy were associated with preterm (PTB) and small-for-gestational age (SGA) births. METHODS:Using data from the Boston Birth Cohort (n = 7047), multiple logistic regression models were performed to estimate the log odds of either PTB or SGA birth, with paternal involvement, paternal social support, and family and friend social support variables as the primary independent variables. RESULTS:About 10% of participating mothers reported their husbands not being involved or supportive during their pregnancies. Lack of paternal involvement was associated with 21% higher risk of PTB (OR = 1.21, 95% CI: 1.01-1.45). Similarly, lack of paternal support was borderline associated with PTB (OR = 1.13, 95% CI: 0.94-1.35). Also marginally significant, lack of paternal involvement (OR = 1.18, 95% CI: 0.95-1.47) and father's support (OR = 1.19, 95% CI: 0.96-1.48) were associated with higher odds of SGA birth. No associations were found between familial and friend support during pregnancy and PTB or SGA. CONCLUSIONS:Among predominantly low-income African Americans, lack of paternal involvement and lack of paternal support during pregnancy were associated with an increased risk of PTB, and suggestive of SGA birth. These findings, if confirmed in future research, underscore the important role a father can play in reducing PTB and/or SGA.
10.1080/0167482X.2017.1398725
The impact of preterm birth <37 weeks on parents and families: a cross-sectional study in the 2 years after discharge from the neonatal intensive care unit.
Health and quality of life outcomes
BACKGROUND:Little is known about the quality of life of parents and families of preterm infants after discharge from the neonatal intensive care unit (NICU). Our aims were (1) to describe the impact of preterm birth on parents and families and (2) and to identify potentially modifiable determinants of parent and family impact. METHODS:We surveyed 196 parents of preterm infants <24 months corrected age in 3 specialty clinics (82% response rate). Primary outcomes were: (1) the Impact on Family Scale total score; and (2) the Infant Toddler Quality of Life parent emotion and (3) time limitations scores. Potentially modifiable factors were use of community-based services, financial burdens, and health-related social problems. We estimated associations of potentially modifiable factors with outcomes, adjusting for socio-demographic and infant characteristics using linear regression. RESULTS:Median (inter-quartile range) infant gestational age was 28 (26-31) weeks. Higher Impact on Family scores (indicating worse effects on family functioning) were associated with taking ≥3 unpaid hours/week off from work, increased debt, financial worry, unsafe home environment and social isolation. Lower parent emotion scores (indicating greater impact on the parent) were also associated with social isolation and unpaid time off from work. Lower parent time limitations scores were associated with social isolation, unpaid time off from work, financial worry, and an unsafe home environment. In contrast, higher parent time limitations scores (indicating less impact) were associated with enrollment in early intervention and Medicaid. CONCLUSIONS:Interventions to reduce social isolation, lessen financial burden, improve home safety, and increase enrollment in early intervention and Medicaid all have the potential to lessen the impact of preterm birth on parents and families.
10.1186/s12955-017-0602-3
Utilization of the Premature Birth Knowledge Scale to Assess Pediatric Provider Knowledge of Neurodevelopmental Outcomes.
Kelly Michelle M,Dean Spencer
Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners
INTRODUCTION:Prematurity affects a significant portion (10-12%) of children in the Unites States, with potential for physical, psychological, neurodevelopmental, and behavioral impairments continuing long past the neonatal period. The specific aim of this research was to evaluate pediatric primary and specialty care providers' knowledge and understanding of neurodevelopmental outcomes of children born prematurely. METHODS:Pediatric nurse practitioner (PNP) members of the National Association of Pediatric Nurse Practitioners participated in an online survey using the 33-item Premature Birth Knowledge Scale (PB-KS) to assess their knowledge of current neurodevelopmental outcomes of children born prematurely. RESULTS:Neither years of practice as a registered nurse nor as a PNP predicted performance on the PB-KS. The mean score on the PB-KS in the PNP sample was 17.8 (possible score = 0-33), with a mean accuracy of 53.9%. Higher scores on the PB-KS were correlated with higher perceived level of preparation to care for children born prematurely. DISCUSSION:To our knowledge, this is the first study to use the PB-KS with pediatric primary and specialty providers. PNPs are uniquely situated to educate and support families facing the long-term consequences of premature birth; to do so they must maintain accurate understanding of current outcomes.
10.1016/j.pedhc.2016.12.006
"Weathering the storm:" Mothers' and fathers' experiences of parenting a preterm infant.
O'Donovan Aisling,Nixon Elizabeth
Infant mental health journal
Parenting preterm infants is a unique experience distinct from parenting full-term infants, characterized by a delayed transition to parenthood and limited caregiving opportunities. This study explored mothers' and fathers' lived experiences of parenting during infancy in the context of preterm birth. Semistructured qualitative interviews were conducted with 13 parents (6 fathers, 7 mothers) of preterm infants. Data were analyzed using interpretative phenomenological analysis. Four superordinate themes emerged: (a) An unnatural disaster: The traumatic nature of preterm birth, (b) The immediate aftermath: Disconnected and displaced, (c) Breaking the ice: Moving from frozen to melted, and (d) Aftershocks: Transitioning home. Both parents experienced preterm birth as traumatic. Similarities and differences in mothers' and fathers' experiences were identified. Preterm birth posed challenges for nurturant and social caregiving and resulted in anxiety, hypervigilance, and overprotective parenting behavior. The results highlight the need for trauma-informed care and further research developing and testing empirically based interventions.
10.1002/imhj.21788
Father's perceptions and care involvement for their very preterm infants at French neonatal intensive care units.
Frontiers in psychiatry
Objectives:We aimed to evaluate (1) fathers' perceptions and care involvement for their very premature infants and their views of the hospitalization period based on parental reports and (2) their evolution over time. Methods:We used an online parental survey to assess answers from parents of very preterm infants who were successfully discharged from French neonatal units. We analysed answers from February 2014 to January 2019 to an anonymous internet-based survey from the GREEN committee of the French Neonatal Society. Responses were compared for period 1 (P1, 1998 to 2013) and period 2 (P2, 2014 to 2019). Results:We analyzed 2,483 surveys, 124 (5%) from fathers and 2,359 (95%) from mothers. At birth, 1,845 (80%) fathers were present in the hospital, but only 879 (38%) were near the mother. The presence of fathers in the NICU increased from P1 to P2 (34.5% vs. 43.1%, = 0.03). Nearly two thirds of fathers accompanied their infants during transfer to the NICU (1,204 fathers, 60.6%). Fathers and mothers had similar perceptions regarding relationships with caregivers and skin-to-skin contact with their infants. However, more fathers than mothers felt welcome in the NICU and in care involvement regarding requests for their wishes when they met their infant (79% vs. 60%, = 0.02) and in the presentation of the NICU (91% vs. 76%; = 0.03). Mothers and fathers significantly differed in the caring procedures they performed ( = 0.01), procedures they did not perform but wanted to perform ( < 0.001), and procedures they did not perform and did not want to perform ( < 0.01). Conclusion:Most fathers were present at the births of their very preterm infants, but fewer fathers were near the mother at this time. Less than two thirds of fathers accompanied their infants to the NICU. There should be further changes to better meet the specific needs of the fathers of infants requiring care in the NICU. Continuing assessment with an online questionnaire may be useful to monitor changes over time in father's involvement in NICUs.
10.3389/fpsyt.2023.1229141
Gratitude, fragility and strength: Perspectives of adults born preterm about prematurity.
Acta paediatrica (Oslo, Norway : 1992)
AIM:The aim of the study was to explore how young adults thought that being born preterm had affected their lives. METHODS:Adult participants of a research cohort were questioned about their perspectives. Answers were analysed using mixed methods. RESULTS:Forty-five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self-centred answers, invoking two main themes: being stronger/'a fighter'/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child-centred or healthcare system-centred themes, 19% with neutral themes; 35% also heard negative parent-centred themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures. CONCLUSION:Participants evaluated their health in a balanced fashion. Preterm-born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems.
10.1111/apa.16779
A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity.
The Journal of pediatrics
OBJECTIVE:To determine parental preferred language, terminology, and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN:Pregnant persons (and their partners) admitted at 22-25 weeks of estimated gestation participated in post antenatal-counseling semistructured interviews to explore preferred language and decision-making approaches of their antenatal counseling session. Interviews were audio-recorded and transcribed, and thematic analysis of the data was performed. RESULTS:Thirty-nine interviews were conducted representing 28 total prenatal consults. Analysis identified 2 overarching themes impacting the whole counseling experience: the need for reassurance and compassionate communication, while parents traveled along a dynamic decision-making journey they described as fluid and ever-changing. Related themes included the following: (1) Finding Balance: parents reported the importance of balancing positivity and negativity as well as tailoring the amount of information, (2) The Unspoken: parents described assumptions and inferences surrounding language, resuscitation options, and values that can cloud the counseling process, (3) Making the Intangible Tangible: parents reported the importance of varied communication strategies, for example, visuals to better anticipate and prepare, and (4) Team Synergism: Parents expressed desire for communication and consistency among and between teams, which increased trust. CONCLUSIONS:Parents facing extremely premature delivery generally did not report remembering specific terminology used during prenatal consultation but rather how the language and counseling approach made them feel and affected the decision-making process. These findings have implications for further research and educational intervention design to improve clinicians' counseling practices to better reflect parental preferences and ultimately improve counseling outcomes.
10.1016/j.jpeds.2022.09.003
Preterm infant contingent communication in the neonatal intensive care unit with mothers versus fathers.
Lavelli Manuela,Stefana Alberto,Lee Sang Han,Beebe Beatrice
Developmental psychology
Very few studies have assessed infant capacity for bidirectional, contingent communication at birth, and to our knowledge there are none with preterm infants in the neonatal period. Presence versus absence of such interactive contingency makes a difference for our theories of development. We examined whether preterm infants can contingently coordinate behaviors with mothers and fathers in spontaneous communication in the Neonatal Intensive Care Unit (NICU), and whether mother-infant versus father-infant engagement and contingency differ. Twenty Italian preterm infants (60% girls, born 27-33 weeks, largely middle-class families) lying in a heated cot in the NICU were videotaped at 35 weeks with mothers, and fathers (counterbalanced), in face-to-face communication. Videotapes were coded on a 1-s time-base with parent and infant engagement scales. Multilevel time-series models evaluated self-contingency (auto-correlation) and interactive contingency (lagged cross-correlation). Mothers (vs. fathers) showed higher levels of engagement, interpreted as more arousing. Fathers (vs. mothers) showed more midrange engagement, interpreted as less "demanding" of infant engagement. Infants were more gaze-on-parent's-face and gaze-on-environment with mothers than fathers. Fathers interacted contingently with infants, whereas mothers did not. However, infants interacted contingently with mothers, but not fathers. When infants were in lower engagement levels 1 s prior, fathers stayed in lower engagement levels in the current second, closer to infants than mothers. We suggest that fathers were more coordinated because fathers were more able to join the infant's dampened state. We suggest that infants were more coordinated with mothers because mothers were more socially stimulating, and more familiar. We conclude that preterm infants, shortly after birth, are capable of contingent communication. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
10.1037/dev0001298
Perceptions of mothers with preterm infants about early communication development: A scoping review.
The South African journal of communication disorders = Die Suid-Afrikaanse tydskrif vir Kommunikasieafwykings
BACKGROUND:Preterm infants are at risk of communication disorders or delays, and their mothers experience various difficult emotions and realities. These communication difficulties could be effectively prevented or addressed through the provision of appropriate maternal support. Maternal perceptions regarding early communication-interaction and development in preterm population should thus be well understood by health professionals. Previous studies have focussed on parents' and patients' perceptions of medical information received from health professionals. Limited research, however, has been undertaken on maternal perceptions of early communication development in preterm infants, specifically in the South African context. OBJECTIVES:The study aims to summarise the range and the nature of available research in the fields of early communication development and intervention in preterm infants, specifically maternal perceptions thereof. METHOD:A scoping review methodology comprising five phases was used. Data were extracted from the final selection of 12 articles and analysed through quantitative and thematic techniques. RESULTS:The results of the scoping review indicate that the defined research field is in a developing phase. Mothers mainly experience negative emotions and have limited knowledge regarding communication interaction with preterm infants. Furthermore, hospitalisation has been experienced as a barrier to natural communication-interaction between mother and infant. CONCLUSION:Based on these results, it is recommended that primary research be conducted with the mothers of preterm infants to establish the most effective strategies for communication-interaction training with this vulnerable population. A further recommendation would be to increase awareness of early communication development and intervention in the preterm population amongst both parents and health professionals.
10.4102/sajcd.v67i1.640
Fragility and resilience: parental and family perspectives on the impacts of extreme prematurity.
Archives of disease in childhood. Fetal and neonatal edition
OBJECTIVES:Extremely preterm babies have a significant risk of neurodevelopmental impairment (NDI). There has been little investigation regarding the impact of prematurity on families. The objective of this study was to explore parental perspectives regarding the impact of prematurity on themselves/their family. METHODS:Over 1 year, parents of children born <29 weeks' gestational age (GA) who were between 18 months old and 7 years old and came for their follow-up visit were invited to participate. They were asked to categorise the impacts of prematurity on their life and their family as positive, negative or both and to describe those impacts in their own words. Thematic analysis was performed by a multidisciplinary group, including parents. Logistic regression was performed to compare parental responses. RESULTS:Among parents (n=248, 98% participation rate), most (74%) reported that their child's prematurity had both positive and negative impacts on their life or their family's life, while 18% reported only positive impacts and 8% only negative impacts. These proportions were not correlated with GA, brain injury, nor level of NDI. The positive impacts reported included: an improved outlook on life, such as gratitude and perspective (48%), stronger family relationships (31%) and the gift of the child (28%). The negative themes were stress and fear (42%), loss of equilibrium due to medical fragility (35%) and concerns about developmental outcomes including the child's future (18%). CONCLUSION:Parents report both positive and negative impacts after an extremely preterm birth, independent of disability. These balanced perspectives should be included in neonatal research, clinical care and provider education.
10.1136/archdischild-2022-325011
Social Media as a Source of Medical Information for Parents of Premature Infants: A Content Analysis of Prematurity-Related Facebook Groups.
American journal of perinatology
OBJECTIVE:Parents are increasingly turning to social media for medical recommendations. Our objective was to systematically examine posts on Facebook for parents of infants hospitalized in the neonatal intensive care unit (NICU) to analyze how advice on medical topics was requested and given, and whether this advice was potentially medically inappropriate. STUDY DESIGN:One hundred Facebook groups were screened for study eligibility. In each group, up to 400 posts on medical topics were evaluated. The first 10 comments of each post were classified based on content and presence of medical advice. Appropriateness of advice was evaluated by a neonatologist. RESULTS:Of 28 groups meeting study criteria, 10 permitted access for data collection. We identified 729 posts requesting medical advice of which 29% referenced the NICU period. Posts on diagnosis and development (30 and 32% of posts, respectively) were the most common topics, and most likely to receive advice (78 and 76% of posts on these topics, respectively). We identified 238 comments containing potentially inappropriate medical advice and 30 comments recommending going against medical advice. CONCLUSION:Parents are utilizing Facebook as a source of support and medical information. Parents are most likely to give development-related advice from their own parenting experiences. The high percentage of posts requesting advice about diagnosis and development in the post-NICU stage suggests parents seek increased anticipatory guidance. KEY POINTS:· Parents of premature infants use Facebook to obtain medical advice.. · Advice was at times potentially medically inappropriate.. · Much advice focused on the post-NICU period..
10.1055/s-0041-1736539
Psychosocial support for parents of extremely preterm infants in neonatal intensive care: a qualitative interview study.
Bry Anna,Wigert Helena
BMC psychology
BACKGROUND:Extremely premature infants (those born before 28 weeks' gestational age) are highly immature, requiring months of care at a neonatal intensive care unit (NICU). For parents, their child's grave medical condition and prolonged hospitalization are stressful and psychologically disruptive. This study aimed at exploring the needs of psychosocial support of parents of extremely premature infants, and how the NICU as an organization and its staff meets or fails to meet these needs. METHOD:Sixteen open-ended interviews were conducted with 27 parents after their infant's discharge from the NICU. Inductive content analysis was performed. RESULTS:Four themes were identified: Emotional support (with subthemes Empathic treatment by staff, Other parents as a unique source of support, Unclear roles of the various professions); Feeling able to trust the health care provider; Support in balancing time spent with the infant and other responsibilities; Privacy. Parents of extremely premature infants needed various forms of emotional support at the NICU, including support from staff, professional psychological help and/or companionship with other patients' parents. Parents were highly variable in their desire to discuss their emotional state with staff. The respective roles of nursing staff, social workers and psychologists in supporting parents emotionally and identifying particularly vulnerable parents appeared unclear. Parents also needed to be able to maintain a solid sense of trust in the NICU and its staff. Poor communication with and among staff, partly due to staff discontinuity, damaged trust. Parents struggled with perceived pressure from staff to be at the hospital more than they could manage and with the limited privacy of the NICU. CONCLUSIONS:The complex and individual psychosocial needs of parents of extremely preterm infants present many challenges for the NICU and its staff. Increasing staffing and improving nurses' competence in addressing psychosocial aspects of neonatal care would help both nurses and families. Clarifying the roles of different professions in supporting parents and developing their teamwork would lessen the burden on nurses. Communicating with parents about their needs and informing them early in their NICU stay about available support would be essential in helping them cope with their infant's hospitalization.
10.1186/s40359-019-0354-4
Experiences of Fathers with Inpatient Premature Neonates: Phenomenological Interpretative Analysis.
Iranian journal of nursing and midwifery research
BACKGROUND:Birth and hospitalization of premature neonates create enormous challenges for the family with serious impacts on parents' mental and emotional health. The present study was designed to explore the experiences of fathers with premature neonates hospitalized in a neonatal intensive care unit (NICU). MATERIALS AND METHODS:In this interpretative phenomenological study, data were collected using in-depth interviews guided with a semi-structured questionnaire and analyzed by interpretative phenomenological analysis. Totally seven interviews were conducted with six participants. RESULTS:The mean age of the fathers was 32 (23-42) years, and all of the fathers lived with their wives. Experiences of the fathers were categorized into 13 subordinate and three superordinate themes: "abandonment and helplessness" (lack of financial support, lack of informational support, and indignation and distrust toward the hospital staffs); "anxiety and confusion" (family disruption, shock due to the premature birth of the neonate, uncertainty, the loss of wishes, feeling of guilt and blame, and occupational disruption); and "development and self-actualization" (emotional development, spiritual development, independence and self-efficacy, and responsibility). CONCLUSIONS:The present study showed that the fathers with premature neonates hospitalized in NICU encounter both positive (development and self-actualization) and negative experiences (lack of financial and informational supports, distrusting toward the hospital staffs, family disruption, and occupational disruption). Planning to manage adverse experiences can help fathers to cope with this situation.
10.4103/ijnmr.IJNMR_21_17
Depression, posttraumatic stress and relationship distress in parents of very preterm infants.
Winter Leanne,Colditz Paul B,Sanders Matthew R,Boyd Roslyn N,Pritchard Margo,Gray Peter H,Whittingham Koa,Forrest Kylee,Leeks Rebecca,Webb Lachlan,Marquart Louise,Taylor Karen,Macey Judith
Archives of women's mental health
To determine the prevalence, associated factors, and relationships between symptoms of depression, symptoms of posttraumatic stress (PTS), and relationship distress in mothers and fathers of very preterm (VPT) infants (< 32 weeks). Mothers (n = 323) and fathers (n = 237) completed self-report measures on demographic and outcome variables at 38 days (SD = 23.1, range 9-116) postpartum while their infants were still hospitalised. Of mothers, 46.7% had a moderate to high likelihood of depression, 38.1% had moderate to severe symptoms of PTS, and 25.1% were in higher than average relationship distress. The corresponding percentages in fathers were 16.9, 23.7, and 27%. Depression was positively associated with having previous children (p = 0.01), speaking little or no English at home (p = 0.01), financial stress (p = 0.03), and recently accessing mental health services (p = 0.003) for mothers, and financial stress (p = 0.005) and not being the primary income earner (p = 0.04) for fathers. Similar associations were found for symptoms of PTS and relationship distress. Being in higher relationship distress increased the risk of depression in both mothers (p < .001) and fathers (p = 0.03), and PTS symptoms in mothers (p = 0.001). For both mothers and fathers, depression was associated with more severe PTS symptoms (p < .001). Fathers of VPT infants should be screened for mental health problems alongside mothers, and postpartum parent support programs for VPT infants should include strategies to improve the couple relationship.
10.1007/s00737-018-0821-6
Parenting sense of competence among chinese parents of premature infants: a cross-sectional study.
BMC pregnancy and childbirth
BACKGROUND:Parenting sense of competence is not only indispensable to the wellbeing of the parents of premature infants, but is also pivotal to the overall development of these infants. This study examined the level of parenting sense of competence and its associated factors in Chinese parents of preterm infants. METHODS:This cross-sectional study was performed at a university teaching hospital in Fuzhou (China) from December 2021 to April 2022. Data were collected using the Parenting Sense of Competence Scale, Edinburgh Postnatal Depression Scale, Social Support Rating Scale, Parenting Care Knowledge Subscale, Parenting Care Skill Subscale, and a sociodemographic questionnaire. RESULTS:A total of 401 Chinese parents were included in the analysis. The average parenting sense of competence scale score was 70.93 ± 13.06. After controlling for demographic characteristics, parenting knowledge (β = 0.149, P = 0.013), parenting skills (β = 0.241, P < 0.001), social support (β = 0.184, P < 0.001) and depression (β = -0.272, P < 0.001), were significantly associated with the parenting sense of competence score, and explained 43.60% of the variance in this score. CONCLUSIONS:Chinese parents of preterm infants were found to have a moderate parenting sense of competence. This could be further improved through efforts aimed at reducing depressive symptoms and increasing parenting knowledge, parenting skills, and social support.
10.1186/s12884-023-05703-5
Needs and Perceptions Relative to Emotional Support in Parents With Preterm Infants.
The Journal of perinatal & neonatal nursing
Objectives of this study were to explore parents' needs for emotional support and how such support could be best delivered during admittance to a neonatal unit. This study took place at 6 neonatal units in Sweden. Forty-two semistructured interviews were analyzed using qualitative content analysis: 26 individual telephone interviews with mothers of preterm infants 6 to 10 months after discharge and 16 face-to-face interviews with parents of preterm infants admitted to neonatal units. The main category to emerge was needs and preferences for emotional support , which consisted of 2 generic categories: emotional needs and preferences for potential support interventions . Emotional needs define the importance of comprehending the new situation, finding meaning, and managing the situation through resources. Preferences for potential support interventions identify possible ways to deliver emotional support in the form of parental group, diary writing, professional counseling, and Internet support. The results highlight the importance of supporting parents' sense of coherence in their situation and parenthood by offering different interventions according to parent preferences. Parental groups could serve as a keystone for emotional support with the possibility to combine with other support mechanisms.
10.1097/JPN.0000000000000604
Information and Communications Technology and Education Customized for Fathers of Preterm Infants.
Kim Hyung Nam
Neonatal network : NN
PURPOSE:Although various educational technology interventions have been introduced to support parents of preterm infants, the interventions tend to focus on mothers over fathers. This study aims to advance understanding of the concerns and needs of fathers and seek opportunities of information technology to support them. DESIGN AND SAMPLE:A convenience sampling method recruited 18 parents (i.e., ten mothers and eight fathers of preterm infants) for interviews. The interview transcripts were analyzed by the inductive content analysis method. MAIN OUTCOME VARIABLE:The analysis identified two main themes (i.e., customized education, learning styles and tools preferred by fathers) and five subthemes (i.e., infant care, self-care, self-regulated online learning, adaptive user interfaces of online education modules, and hands-on learning with multimedia). RESULTS:The interviewed parents emphasized the importance of education customized for the fathers of preterm infants, and argued that an e-learning system has the potential to fulfill the fathers' educational needs.
10.1891/0730-0832.39.2.66
Interactive sequences between fathers and preterm infants in the neonatal intensive care unit.
Early human development
AIMS:The first purpose of the study was to examine fathers' spontaneous communicative behavior with their preterm infants in the neonatal intensive care unit, and how father's and infant's behaviors affected each other. The second purpose was to examine any possible association between the fathers' and/or infants' characteristics and the quality of fathers' behaviors with their infants. STUDY DESIGN/SUBJECTS/OUTCOME MEASURES:Father-preterm infant dyads (n=20) were assessed at 34-36 weeks postmenstrual age, during a spontaneous face-to-face communication with the infant placed in a heated cot in the NICU, and coded according to the Parent-Preterm Infant Coding System. RESULTS:The presence of the father's Affiliative Behavior increased the occurrences of infant Gazing at the parent's face. In turn, infant gazing increased the occurrence of paternal Affiliative Behavior. The likelihood of infant's Gazing at the father's face was also significantly elicited by infrequent occurrences of paternal Affectionate Talk, co-occurring with Gazing at infant with Positive Facial Affect (but no Touch). With regard to the predictors of quality in father-infant interactions, we found a significant positive correlation between fathers' level of depressive symptomatology and fathers' Affiliative Behavior. CONCLUSION:Our results show the of bidirectional sequential patterns of communication between fathers and preterm infants at 35 weeks postmenstrual age, and provide important information about the quality and modalities of paternal communication and their influence on infant behavioral states. From a clinical perspective, these results suggest that father-specific interventions designed to improve and sustain fathers' positive engagement with infants in the NICU should be pursued.
10.1016/j.earlhumdev.2019.104888
Fathers' experiences of feeding their extremely preterm infants in family-centred neonatal intensive care: a qualitative study.
International breastfeeding journal
BACKGROUND:Extremely preterm infants need advanced intensive care for survival and are usually not discharged before they reach the time of expected birth. In a family-centred neonatal intensive care unit both parents are involved at all levels of care including the feeding process. However, studies focusing on fathers in this situation are scarce. The purpose of this study was to explore the experiences of feeding extremely preterm infants in a neonatal intensive care unit from fathers' perspectives. METHODS:The study adopts a qualitative inductive method, reported according to the COREQ checklist. Seven fathers of extremely preterm infants (gestational age 24-27 weeks) in neonatal intensive care in Sweden were interviewed by telephone after discharge in 2013-2014. The interviews were analysed using a qualitative content analysis and confirmed by triangulation in 2021. RESULTS:Six sub-categories and two generic categories formed the main category: "a team striving towards the same goal". The fathers were equally involved and engaged members of the feeding team all hours of the day. The fathers shared responsibility and practical duties with the mothers, and they provided as much support to the mothers as they could. However, the fathers found it difficult to support and encourage the mothers to breastfeed and express breastmilk when the breastmilk production was low. The fathers experienced a loss when breastfeeding was not successful. CONCLUSIONS:The findings indicate that fathers want to be involved with infant care, including night-time feeds, and long and demanding feeding processes. Fathers and staff need to collaborate to provide the best support to mothers during the feeding process. This study may inspire hospital staff to acknowledge and support fathers to become more involved in the oral feeding process when an infant is born extremely preterm.
10.1186/s13006-021-00394-0
What parents want to know about caring for their preterm infant: A longitudinal descriptive study.
Patient education and counseling
OBJECTIVES:To describe the characteristics of parent knowledge needs and skill acquisition over the course of their infant's neonatal intensive care unit hospitalization. METHODS:148 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. RESULTS:The 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. CONCLUSIONS:Parents 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 IMPLICATIONS:The 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 REGISTRATION:ClinicalTrials.gov, ID NCT03418870.
10.1016/j.pec.2021.04.011
Exploring the knowledge of community-based nurses in supporting parents of preterm babies at home: A survey-based study.
Nursing open
AIM:This study aimed to investigate the confidence levels, knowledge base and learning needs of community-based nurses relating to the care of preterm babies and parents, to explore what education is required and in what format. DESIGN:An online survey methodology was used. METHODS:A 32-item questionnaire was distributed via social media platforms to community-based nurses in Australia. RESULTS:Descriptive analysis was undertaken relating to knowledge base, confidence levels, previous training, learning and resource needs and barriers to education. It was deemed vital to expand confidence and knowledge in this area. Gaps in learning resources were identified and a need for more training in topics such as developmental outcomes, feeding, expected milestones, weight gain, growth trajectories and supporting parents. Online resources were the preferred format to teach key knowledge to community-based health professionals, tailored to the specific features of preterm babies and support needs of parents.
10.1002/nop2.937
Quality of life among parents of preterm infants: a scoping review.
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
PURPOSE:To synthesize the body of knowledge on the factors influencing the QoL of mothers and fathers of preterm infants. METHODS:A scoping review was performed. Publications indexed in PubMed®, Web of Science™, CINAHL® and PsycINFO® were searched, targeting studies presenting original empirical data that examined parental perception on QoL after a preterm delivery. Eligibility and data extraction were conducted by two independent researchers. The main quantitative findings were synthesized and qualitative data were explored by content analysis. RESULTS:The studies, 11 quantitative and 1 mixed methods, were derived mainly from the USA (n = 6). Heterogeneity across the studies was observed regarding the operationalization of QoL and the use of units of analysis (mothers, parents, families and caregivers). In a context where 40 out of 45 covariates were analysed by only one or two studies, results suggested that parental QoL after a preterm delivery is influenced by factors related with mother's characteristics, family issues and health care environment rather than infants' variables. Factors regarding fathers' characteristics and structural levels were not addressed. CONCLUSIONS:Standardizing the operationalization of the QoL when analysing mothers and fathers of preterm infants calls for a structured questionnaire adapted to their specific needs. Further research should include both mothers and fathers, invest in mixed methods approaches and be performed in different countries and settings for allowing integration and comparison of findings.
10.1007/s11136-017-1771-6
Parental Perspectives Regarding Outcomes of Very Preterm Infants: Toward a Balanced Approach.
Jaworski Magdalena,Janvier Annie,Lefebvre Francine,Luu Thuy Mai
The Journal of pediatrics
OBJECTIVES:To explore parental perspectives regarding their preterm child at 18 months corrected age and to investigate whether reported answers correlate with level of neurodevelopmental impairment (NDI) as defined by clinicians. We hypothesized that parents would report more negative concerns with increasing level of NDI. STUDY DESIGN:This study included 190 infants born <29 weeks of gestational age in 2009-2012 at 1 tertiary university health center. Infants underwent detailed developmental assessment at 18 months corrected age, and were classified into either absence or presence of mild to moderate or severe NDI. Parents were asked 2 open-ended questions: "What concerns you most about your child?" and "Please describe the best things about your child." Open-ended questions were analyzed using qualitative methodology. RESULTS:In this cohort, 49%, 43%, and 8% of participants had no, mild to moderate, and severe NDI. The majority of parents (72.8%) had both positive and negative aspects to report; 26.8% only had positive ones. The main positive themes invoked by parents included their child's personality (61%), happiness (40%), developmental outcome/progress (40%), and physical health (11%). The main themes regarding parental concerns included neurodevelopment (56%), notably language and behavior, and physical health (24%), particularly growth/nutrition and physical fragility. There was no association between positive themes and categories of NDI, but parents of children with mild to moderate NDI reported more concerns about development. CONCLUSIONS:Neonatal outcome research would benefit from incorporating parental perspectives regarding their child, including negative and positive aspects, enabling physicians to provide complete and balanced information to parents of all preterm infants.
10.1016/j.jpeds.2018.03.006
Effect of an Educational Presentation about Extremely Preterm Infants on Knowledge and Attitudes of Health Care Providers.
Doucette Stefani,Lemyre Brigitte,Daboval Thierry,Dunn Sandra,Akiki Salwa,Barrowman Nick,Moore Gregory P
American journal of perinatology
To determine healthcare providers' knowledge (HCP) about survival rates of extremely preterm infants (EPI) and attitudes toward resuscitation before and after an educational presentation and, to examine the relationship between knowledge and attitudes toward resuscitation. Participants completed a survey before and after attending a presentation detailing evidence-based estimates of survival rates and surrounding ethical issues. Respondents included neonatologists, obstetricians, pediatricians, maternal-fetal medicine specialists, trainees in pediatrics, obstetrics, neonatal-perinatal medicine and neonatal and obstetrical nurses. In total, 166 participants attended an educational presentation and 130 participants completed both pre- and postsurveys (response rate 78%). Prepresentation, for all gestations, ≤ 50% of respondents correctly identified survival/intact survival rates. Postpresentation, correct responses regarding survival/intact survival rates ranged from 49 to 86% ( < 0.001) and attitudes shifted toward being more likely to resuscitate at all gestations regardless of parental wishes. There was a weak-to-modest relationship (Spearman's coefficient 0.24-0.40, < 0.001-0.004) between knowledge responses and attitudes. Attendance at an educational presentation did improve HCP knowledge about survival and long term outcomes for EPI, but HCP still underestimated survival and were not always willing to resuscitate in accordance with parental wishes. These findings may represent barriers to some experts' recommendation to use shared decision-making with parents when considering the resuscitation options for their EPI.
10.1055/s-0037-1601308
Quality of life of parents of very preterm infants 4 months after birth: a mixed methods study.
Amorim Mariana,Alves Elisabete,Kelly-Irving Michelle,Ribeiro Ana Isabel,Silva Susana
Health and quality of life outcomes
BACKGROUND:Knowledge about parental quality of life (QoL) is paramount to family-centred and integrated healthcare on prematurity, but evidence is limited. We aimed to explore mothers' and fathers' perspectives about their QoL 4 months after a very preterm childbirth. METHODS:This is a cross-sectional mixed methods study using a convergent design. Parents of very preterm infants were systematically recruited at all level III neonatal intensive care units in the Northern health region of Portugal for one year. Four months after childbirth, 61 mothers and 56 fathers filled-in the World Health Organization Quality of Life - BREF Inventory, and 26 couples were interviewed. Linear regression models were computed to assess the association between participants' characteristics and the QoL. Qualitative data were thematically analysed. RESULTS:A quantitative analysis revealed that the perception of QoL was not significantly different by gender. QoL scores increased slightly from the environment (Mean (SD): 72.1 (14.2)) to the psychological domains (Mean (SD): 78.7 (14.4)). All scores were influenced by psychological characteristics. Socioeconomic position influenced both parents' perceptions concerning the environment domain, and maternal physical and psychological QoL. Infant-related factors were associated with overall QoL among women and with the physical, psychological, social and environment domains among men. Qualitative findings indicated accommodation mechanisms that intertwine the focus on constraining factors (surveillance, sleep disturbances, non-supportive healthcare policies, hygienization) with facilitating factors (social support, accessibility/quality of healthcare, opportunities for developing parental skills). These processes were anchored in child-centredness and a framework that construct hierarchies of hope and expectations about infant's health and development. CONCLUSIONS:To capture parental QoL using mixed methods raises awareness for developing intersectoral family-centred policies, integrated health services and focused-interventions to decrease the disempowering effects of surveillance and hygienization.
10.1186/s12955-018-1011-y
Observed Progression of Parents' Understanding of Preterm Infants' Behavioral Signs at 33 to 35 Weeks Corrected Age.
Nakai Aya,Nakamura Nobue
Advances in neonatal care : official journal of the National Association of Neonatal Nurses
BACKGROUND:Interventions aimed at improving parental understanding of preterm infants' behavioral signs have drawn increased attention in recent years. However, there are limited data regarding parents' actual perceptions of infants' behavior during parent-infant interactions while infants are in a light-sleep state. PURPOSES:(1) To describe parental perceptions of infants' behavior at 33 to 35 weeks' corrected age during light-sleep and (2) to identify changes in parental perceptions of preterm infants' behavior over time. METHODS:This study used a qualitative, longitudinal design based on observations and interviews. Three sets of parents and their infants born between 29 and 30 weeks' gestational age were observed up to 3 times during light sleep states when the infants were 33 to 35 weeks' corrected age. Parents were interviewed regarding their perceptions of infant behavior/growth once at the time of observation and once more within 2 weeks of the final observation. The findings are based on the observation of parents' perception-driven interactions with infants. RESULTS:Four themes emerged describing the transition of parental perception that progresses to gain a better understanding of their infant's behavior through repeated interaction. IMPLICATIONS FOR PRACTICE:The findings of this study inform caregivers in neonatal intensive care units regarding the unique experience of parent-infant dyads. This knowledge can help promote family-centered developmental care efforts in neonatal intensive care units. IMPLICATIONS FOR RESEARCH:Further research should focus on studying a larger sample group to confirm the findings and refining strategies to incorporate the findings to enhance neonatal intensive care unit care.
10.1097/ANC.0000000000000700
Parental experiences of caring for preterm infants in the neonatal intensive care unit, Limpopo Province: a descriptive qualitative study exploring the cultural determinants.
BMC health services research
BACKGROUND:Parent-infant interaction is highly recommended during the preterm infant hospitalisation period in the Neonatal Intensive Care Unit (NICU). Integrating culturally sensitive healthcare during hospitalisation of preterm infants is critical for positive health outcomes. However, there is still a paucity of evidence on parental experience regarding cultural practices that can be integrated into preterm infant care in the NICU. The study explored and described the cultural determinants of parents that can be integrated into the care of preterm infants in the NICU. METHODS:A descriptive qualitative research design was followed where twenty (n=20) parents of preterm infants were purposively selected. The study was conducted in the NICU in Limpopo using in-depth individual interviews. Taguette software and a thematic analysis framework were used to analyse the data. The COREQ guidelines and checklist were employed to ensure reporting standardisation. RESULTS:Four themes emerged from the thematic analysis: 1) Lived experienced by parents of preterm infants, 2) Interactions with healthcare professionals, 3) Cultural practices concerning preterm infant care, and 4) Indigenous healthcare practices for preterm infants. CONCLUSIONS:The study emphasised a need for healthcare professionals to understand the challenges parents of preterm infants face in NICU care. Furthermore, healthcare professionals should know indigenous healthcare practices to ensure relevant, culturally sensitive care.
10.1186/s12913-024-11117-6
Mental health monitoring in parents after very preterm birth.
Acta paediatrica (Oslo, Norway : 1992)
AIM:To evaluate parental mental health monitoring during follow-up care for very preterm (VPT) infants, describe symptoms of anxiety and depression and risk factors for mothers and fathers at 1 and 12 months of corrected age. METHODS:Parents completed the Hospital Anxiety and Depression Scale (HADS). Psychological symptoms and risk factors were analysed within and between mothers and fathers. RESULTS:In 4 years, the monitoring reached 1260 (48%) families. Of these, 693 mothers and 340 fathers (300 couples) completed the HADS twice. At 1 month, 22% and 15% of the mothers and 10% and 9% of the fathers, respectively, reported elevated symptoms of anxiety and depression. At 12 months, these rates were significantly reduced to 14% and 9% for mothers and 5% and 4% for fathers respectively. Within couples, anxiety and depression were positively associated. At 12 months, in 20% of the couples, one or both parents reported elevated symptoms. Risk factors were length of hospital stay, migration background, educational level and employment status. CONCLUSION:The mental health of parents of VPT infants improved, but elevated symptoms were still observed in 17% of included families after one year. Acknowledging and remediating parental mental health remain essential during follow-up care.
10.1111/apa.16064
Fathers' experiences with their preterm babies admitted to neonatal intensive care unit: A multi-method study.
Stefana Alberto,Padovani Ezio Maria,Biban Paolo,Lavelli Manuela
Journal of advanced nursing
AIM:The aim of this study was to investigate fathers' emotional experiences of their infant's preterm birth and subsequent stay in neonatal intensive care unit. BACKGROUND:When a baby is born preterm, there is also the premature interruption of the process of preparation for fatherhood. As a result, the impact on fathers of the preterm birth can bring negative consequences for the development of father-infant relationship. DESIGN:A multi-method approach was used which included ethnographic observation, semi-structured interviews with fathers, a self-report questionnaire and clinical information between September 2015-March 2017. METHOD:Data were analysed using a mixed-method: a thematic analysis of data from the interviews and quantitative analyses to detect possible clusters of fathers' emotional experiences and associations between clusters and fathers' and/or infants' characteristics. RESULTS:Two clusters were identified. The "fathers-of-preterm-infants" touched their baby as soon as they were given the opportunity and without fear that they would harm their infant. They were struck by their baby's physical appearance. In contrast, the "preterm fathers" preferred not to touch their baby when first given the chance, for fear of breaking/damaging/infecting her/him. They were struck both by the baby's physical appearance and by the technology/equipment around her/him and were afraid that their infant would die. All the "fathers-of-preterm-infants", but only just over half of the "preterm fathers", were actively engaged in their infant's care. Clusters were associated with the infant's gestational age. CONCLUSION:Fathers of preterm infants should receive personalized support specifically addressed to them and based on the infant's gestational age.
10.1111/jan.13527
Experiences, Knowledge, and Preferences of Canadian Parents Regarding Preterm Mode of Birth.
Morfaw Frederick,Gao Angel,Moore Gregory,Bacchini Fabiana,Santaguida Pasqualina,Mukerji Amit,McDonald Sarah D
Journal of obstetrics and gynaecology Canada : JOGC = Journal d'obstetrique et gynecologie du Canada : JOGC
OBJECTIVES:To describe Canadian parents' experiences with mode of birth for preterm singleton pregnancies; knowledge about maternal and infant risks of the different modes of preterm birth, particularly breech birth; and communication preferences with respect to mode of birth. METHODS:We conducted an online survey of Canadian parents who had experienced the preterm birth of a live-born infant between 2010 and 2019. Data were collected from August to September 2019. The sample size was calculated as requiring 96 participants. RESULTS:Of the 153 respondents, 152 were mothers. Respondents were approximately evenly split between those who had experienced an extremely preterm birth (<28 wk), a very preterm birth (28-31 wk), or a moderate-to-late preterm birth (32-36 wk). Most parents reported that mode of birth was discussed before the birth (61.7%, 73.3% and 77.3% for extremely, very, and moderate-to-late preterm births, respectively). The minority of parents reported being given a choice about mode of birth (20.8%, 23.0%, and 36.4% for extremely, very, and moderate-to-late preterm births, respectively). The use of written material during discussion on mode of birth was rare (2.1%, 3.3% and 6.8% for extremely, very, and moderate-to-late preterm births, respectively). Of women who had a cesarean delivery, 39.6% (36/91) were unaware of the maternal risks. Many parents expressed preference for both oral and written communication during counselling on mode of birth (62.6%). CONCLUSION:Few Canadian parents reported receiving a choice about mode of preterm birth, being aware of associated risks, or receiving written information. There is an urgent need to develop tools that provide information for parents facing preterm birth.
10.1016/j.jogc.2020.10.020
Experiences, mental well-being and community-based care needs of fathers of late preterm infants: A mixed-methods pilot study.
Nursing open
Aims:We explore fathers' experience of caring for a late preterm infant including their stressors, needs and corresponding interventions proffered by public health nurses. Design:Pilot mixed-methods exploratory sequential design. Methods:We collected (a) qualitative data from semi-structured interviews (5) and (b) quantitative data (31) about fathers' levels of stress (Parenting Stress Index), anxiety (Speilberger State-Trait Anxiety) and depression (Edinburgh Postnatal Depression Scale) at 6-8 weeks after birth of their infant. Results:Fathers appreciated their infant was born 'early', however, discovered through experience the demands of their infant, which appeared as stress (child and parent domains) and anxiety. Themes: hypervigilance in care explained the fathers' sense of competency and role restriction; infant fatigue and parental feeding elucidated the stressful aspect of father-infant interaction. Unscientific advice from healthcare providers was confusing and frustrating while uncertainty of rehospitalization caused worries, fears or stress. One father experienced depressive symptoms.
10.1002/nop2.370
Fathers' lived experiences of caring for their preterm infant at the neonatal unit and in neonatal home care after the introduction of a parental support programme: A phenomenological study.
Scandinavian journal of caring sciences
AIM:To describe fathers' lived experiences of caring for their preterm infant at the neonatal unit and in hospital-based neonatal home care after the introduction of an individualised parental support programme. METHOD:Seven fathers from a larger study were included due to their rich narrative interviews about the phenomenon under study. The interviews took place after discharge from neonatal home care. The theoretical perspective was descriptive phenomenology. Giorgi's outlines for phenomenological analysis were used. Findings The general structure of the phenomenon was described by the following four themes: The partner was constantly present in the fathers' minds; The fathers' were occupied by worries and concerns; The fathers felt that they were an active partner to the professionals and Getting the opportunity to take responsibility. The fathers were satisfied with the support and treatment during their infant's hospitalisation. However, there were times when they felt excluded and not fully responsible for their infant. The fathers prioritised the mother, thus ignoring their own needs. Furthermore, they worried about their infant's health and the alteration of their parental role. Neonatal home care was experienced as a possibility to regain control over family life. CONCLUSION:The general structure of fathers' experiences highlights the importance of professionals becoming more responsive to fathers' needs and to tailoring support to fathers by focusing on their individual experiences and needs.
10.1111/scs.12930
Parental representations after preterm birth: a narrative review.
Frontiers in psychology
Preterm birth accounts for nearly 15 million births annually worldwide and constitutes a considerable risk factor for atypical development. This birth context is a source of stress for the parents and often leads to an early separation between their child and them. Research on the influence of the birth status on the infant's attachment style has shown no systematic link between preterm birth and the development of insecure attachment in children born preterm. This has opened up research perspectives in understanding the role of environmental factors. A literature review was conducted to present an overview of the current findings on parental representations (PR), particularly maternal ones, and their role in the context of preterm birth. PR quality appears to be associated with specific dyadic interaction patterns, thus exposing vulnerability factors. Studies exploring PR have pointed out the importance of considering parental mental elaboration mechanisms and contextual moderators in supporting socio-emotional development among children born preterm. We discussed the challenges of investigating PR in the context of preterm birth for future studies and emphasized the need for research studies to be conducted according to a developmental and non-deterministic perspective. This narrative review also aimed to highlight the importance of family centered care interventions in the context of a public policy focused on the child's "First 1,000 days" of life.
10.3389/fpsyg.2023.1114418
Fathers' experiences of supporting their partners during their preterm infant's stay in the neonatal intensive care unit: a multi-method study.
Journal of perinatology : official journal of the California Perinatal Association
OBJECTIVE:To explore how the fathers experience their role as a support for their partner and the relationship with them during their preterm infant's stay in the NICU. STUDY DESIGN:Multi-method longitudinal study involving ethnographic observation, semi-structured interviews, self-report questionnaires, and clinical information. Twenty fathers of preterm infants hospitalized in a level-III-NICU were included. Data were analyzed using thematic continent analysis. RESULTS:Three main themes were identified: support for mother (subthemes: putting mother's and infant's needs first; hiding worries and negative emotions; counteracting the sense of guilt; fear that the mother would reject the child), mother's care for the infant (subthemes: observing mother engaged in caregiving; mother has "something extra"), and couple relationship (subthemes: collaboration; bond). CONCLUSION:Fathers supporting their partners during the stay in the NICU experience emotional distress and the need for being supported that often are hidden. This demands a great deal of emotional and physical energy.
10.1038/s41372-021-01195-3
What Parents Know Matters: Parental Knowledge at Birth Predicts Caregiving Behaviors at 9 Months.
Leung Christy Y Y,Suskind Dana L
The Journal of pediatrics
OBJECTIVE:To examine the mediating role of socioeconomically disadvantaged parents' knowledge of early cognitive and language development at the first postpartum visit in the relation between education and caregiving behaviors at 9 months. STUDY DESIGN:Parental knowledge was assessed at the 1-week newborn visit (n = 468); anticipatory guidance received and desired at 1-month (n = 212) and 6-month (n = 191) visits were reported; and caregiving behaviors toward infants during a teaching task were observed at 9-month visit (n = 173). RESULTS:We found substantial variation in knowledge and caregiving behaviors. Parents who had more knowledge of infant development at 1 week were more likely to respond to cues (r = 0.18; P < .05) and foster social-emotional (r = 0.17; P < .05) and cognitive growth (r = 0.20; P < .05) at 9 months. Importantly, the indirect effect of education on cognitive growth fostering at 9 months through knowledge at 1 week was significant, controlling for primary language and number of other children in the home (infancy: β = 0.06; B = 0.07; SE = 0.04; 95% CI, 0.007-0.165; early childhood: β = 0.04; B = 0.06; SE = 0.03; 95% CI, 0.008-0.152). Open-ended responses indicated that anticipatory guidance in the first 6 months focused on infant physical growth; however, parents did not request additional anticipatory guidance from their pediatricians. CONCLUSIONS:This study sheds light on the importance of promoting parental knowledge about cognitive and language development to foster parental cognitive stimulations and language inputs during the first year of life. This study highlights the important role of anticipatory guidance on cognitive and language development during the earliest well-child visits and the need to better understand parental baseline knowledge to tailor anticipatory guidance to the family strengths and needs.
10.1016/j.jpeds.2019.12.021
Prematurity-related knowledge among mothers and fathers of very preterm infants.
Matos Joana,Amorim Mariana,Silva Susana,Nogueira Conceição,Alves Elisabete
Journal of clinical nursing
OBJECTIVE:Empowering parents as health promoters may contribute to decrease the costs associated with prematurity. In Portugal, 8% and 1% of the births occurring in 2018 were preterm and very preterm, respectively. This study aimed to assess prematurity-related knowledge with regard to its prevalence, causes and consequences, according to sociodemographic, obstetric and offspring's characteristics, among mothers and fathers of very preterm infants. METHODS:Between May and July 2017, mothers and fathers of very preterm infants were invited to participate through the Portuguese association of parents for support to the premature baby, with 196 parents being included. Knowledge on prematurity (prevalence, causes and consequences) was collected through a structured online questionnaire. Reporting of this research follows STROBE guidelines for cross-sectional studies. RESULTS:Parents estimated a median prevalence of preterm and of very preterm delivery in Portugal of 15% and 8%, respectively. However, approximately 20% did not provide an estimate. More than 90% of the participants acknowledged placental complications, hypertensive disorders of pregnancy, multiple pregnancy and intrauterine growth restriction as causes of preterm delivery, whereas only 24.2% identified low socioeconomic status. Cardiac complications and respiratory morbidity were recognised as the main consequences of prematurity by more than 80% of the parents. Overall, parents with a higher socioeconomic status tended to provide correct responses more frequently than those with a low socioeconomic status. CONCLUSIONS:The results revealed the existence of knowledge gaps regarding the prevalence, causes and consequences of premature delivery. Understanding the main facilitators and barriers to the achievement of prematurity-related knowledge may contribute for the global improvement of preventing this condition. RELEVANCE TO CLINICAL PRACTICE:It is crucial to include the improvement of parents' knowledge about prematurity as a complementary dimension during the provision of medical care, with nurses playing a key role as main sources of information.
10.1111/jocn.15361
Social Support Provision: Perspective of Fathers With Preterm Infants.
Kim Hyung Nam
Journal of pediatric nursing
PURPOSE:Today's social support systems for parents of preterm infants tend to pay more attention to mothers than fathers. As a father also plays a critical role in caring for a preterm infant, there is a need to advance understanding of paternal concerns and needs about social supports that should better support fathers. DESIGN AND METHODS:Interviews were conducted with 18 parents of preterm infants (i.e., 10 mothers and 8 fathers) who have been discharged from the NICU to home. All interviews were audio-recorded and subsequently transcribed verbatim for analysis. RESULTS:The fathers' primary resources are healthcare professionals, their partners, and peer fathers of preterm infants. The fathers expressed various social support needs associated with informational, belonging, and emotional supports. CONCLUSIONS:It is recommended that a social support system be customized accordingly to better accommodate paternal needs. PRACTICE IMPLICATIONS:Healthcare professionals may refer to the study results in designing the educational materials for fathers of preterm infants.
10.1016/j.pedn.2018.01.017
Health literacy of parents of very preterm infants at NICU admission and discharge: a prospective cohort study.
Enlow Elizabeth,Gray Megan M,Wallace-Keeshen Sara,D'Agostino Jo Ann,Abbasi Soraya,Lorch Scott A
Journal of perinatology : official journal of the California Perinatal Association
OBJECTIVE:To determine the prevalence of limited health literacy in parents of infants born ≤32 and 0/7 weeks and if health literacy changes during hospitalization. STUDY DESIGN:Multi-site, prospective cohort study measuring health literacy using the Parent Health Literacy Activities Test, which estimates caregivers' ability to complete tasks such as reading prescription labels and preparing bottles. Data were analyzed using parametric and nonparametric comparison tests and multivariable regression to control for confounders. RESULT:Of the 137 participants, 31% missed ≥3 questions of 8. Scores were not associated with admission characteristics or NICU complications. Lower scores were associated with lower nurses' (rho 0.20, p = 0.04) but not parents' (rho -0.12, p = 0.22) ratings of discharge readiness. Scores improved slightly from admission to discharge (p = 0.049). CONCLUSION:Many parents have difficulty answering questions related to basic infant care tasks. NICUs should ensure that communication and discharge planning are mindful of health literacy.
10.1038/s41372-019-0340-y
Parental perspective on important health outcomes of extremely preterm infants.
Archives of disease in childhood. Fetal and neonatal edition
BACKGROUND AND OBJECTIVE:Neonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed to investigate parental perspectives about the health and development of their preterm children. METHODS:Parents of children aged 18 months to 7 years born <29 weeks' gestational age presenting at a neonatal follow-up clinic over a 1-year period were asked to evaluate their children's health and development. They were also asked the following question: 'if you could improve two things about your child, what would they be?' Responses were analysed using mixed methods. Logistic regressions were done to compare parental responses. RESULTS:248 parents of 213 children (mean gestational age 26.6±1.6 weeks, 20% with severe NDI) were recruited. Parents evaluated their children's health at a median of 9/10. Parental priorities for health improvements were (1) development, mainly behaviour, emotional health and language/communication (55%); (2) respiratory heath and overall medical fragility (25%); and (3) feeding/growth issues (14%). Nineteen per cent explicitly mentioned 'no improvements'. Parents were more likely to state 'no improvements' if child had no versus severe NDI OR 4.33 (95% CI 1.47 to 12.75)) or if parents had no versus at least a high school diploma (OR 4.01 (95% 1.99 to 8.10)). CONCLUSIONS:Parents evaluate the health of their preterm children as being very good, with positive perspectives. Parental concerns outside the developmental sphere should also be addressed both in clinical follow-up and research.
10.1136/archdischild-2021-322711
Mind the gap: Comparing parents' information needs about impending preterm birth to current clinical practices using a mixed methods approach.
PEC innovation
Objective:To identify parents' information needs about impending very preterm birth and compare these needs to current information practices in the Netherlands. Methods:Step 1: We surveyed = 203 parents of preterm infants to assess their information needs. Data were analyzed using inductive thematic analysis. Step 2a: We collected information resources from hospitals ( = 9 NICUs) and via an online search. These materials were analyzed using deductive thematic analysis. Step 2b: We compared findings from Steps 1-2a. Results:We identified four themes pertaining to parents' information needs: (1) participation in care, (2) emotional wellbeing, (3) experience/success stories, and (4) practical information about prematurity. Clinicians' and were considered prerequisites for optimal information-provision. Notably, hospital resources provided mainly medical information about prematurity with some emphasis on participation in care, while parent associations mainly focused on emotional wellbeing and experience/success stories. Conclusion:While parents demonstrate clear information needs about impending very preterm birth, current information resources satisfy these partially. Innovation:Our multidisciplinary research team included both scholars and veteran NICU parents. As such, we identified parents' information needs bottom-up. These parent-driven insights will be used to design an innovative, tailored information platform for parents about impending very preterm birth.
10.1016/j.pecinn.2024.100297
Quality of Life of Mothers and Fathers 4 to 6 Months After Birth: The Effect of a Very Preterm Delivery.
Maternal and child health journal
OBJECTIVES:The sparse literature on the effect of a preterm delivery on parents' quality of life (QoL) yields inconsistent results, restricting their analysis to mothers. The present study aimed to assess the effect of a very preterm delivery on parents' gender-specific perception of QoL, 4 to 6 months after birth. METHODS:A total of 117 parents of very preterm infants hospitalized at birth in a level III Neonatal Intensive Care Unit, and 214 parents of never hospitalized full-term infants born in a public maternity, both located in the North of Portugal, participated in the study, 4 to 6 months after delivery (November 2013-June 2015). The Portuguese version of the World Health Organization Quality of Life - BREF Inventory was applied and scores were transformed to reflect a 0 to 100 scale. RESULTS:The mean [standard deviation (SD)] of overall QoL ranged between 72.1 (13.3) among mothers of full-term infants and 74.6 (12.5) among mothers of very preterm infants. The perception of QoL was not significantly different among parents of very preterm and full-term infants, according to gender. The highest scores were observed in the psychological and physical dimensions, for both mothers and fathers. CONCLUSIONS FOR PRACTICE:The lack of differences on the perception of QoL among mothers and fathers of very preterm and full-term infants, highlights the need to deeply understand and explore the influence of accommodation mechanisms, the extended family/community and health policies on parental QoL trajectories.
10.1007/s10995-023-03739-9
Effects of an Infant Care Education Program for Mothers of Late-preterm Infants on Parenting Confidence, Breastfeeding Rates, and Infants' Growth and Readmission Rates.
Child health nursing research
PURPOSE:The purpose of this study was to evaluate the effects of an education program for mothers of late-preterm infants on parenting confidence, breastfeeding rate, and infants' growth and readmission rate. METHODS:The participants were 53 mothers of late-preterm infants (26 in the experimental group and 27 in the control group). The experimental group was administered the late-preterm care education program while the control group received standard care. The program consisted of two sessions during hospitalization after birth, one session at the time of discharge, and telephone and social networking service consultations at weekly intervals for the month following discharge. The collected data were analyzed using the t-test, test, and repeated-measures analysis of variance. RESULTS:Parenting confidence and the breastfeeding rate were significantly higher in the experimental group than in the control group. However, there was no significant difference in the late-preterm infants' growth and readmission rates between the experimental and control groups. CONCLUSION:A care education program for mothers of late-preterm infants can be a useful nursing intervention in clinical practice.
10.4094/chnr.2020.26.1.11
Preterm birth: the role of knowledge transfer and exchange.
Health research policy and systems
BACKGROUND:Preterm birth (PTB) is the leading cause of death in children under age five. Healthcare policy and other decision-making relevant to PTB may rely on obsolete, incomplete or inapplicable research evidence, leading to worsened outcomes. Appropriate knowledge transfer and exchange (KTE) strategies are an important component of efforts to reduce the global PTB burden. We sought to develop a 'landscape' analysis of KTE strategies currently used in PTB and related contexts, and to make recommendations for optimising programmatic implementation and for future research. METHODS:In the University of California, San Francisco's Preterm Birth Initiative, we convened a multidisciplinary working group and examined KTE frameworks. After selecting a widely-used, adaptable, theoretically-strong framework we reviewed the literature to identify evidence-based KTE strategies. We analysed KTE approaches focusing on key PTB stakeholders (individuals, families and communities, healthcare providers and policymakers). Guided by the framework, we articulated KTE approaches that would likely improve PTB outcomes. We further applied the KTE framework in developing recommendations. RESULTS:We selected the Linking Research to Action framework. Searches identified 19 systematic reviews, including two 'reviews of reviews'. Twelve reviews provided evidence for KTE strategies in the context of maternal, neonatal and child health, though not PTB specifically; seven reviews provided 'cross-cutting' evidence that could likely be generalised to PTB contexts. For individuals, families and communities, potentially effective KTE strategies include community-based approaches, 'decision aids', regular discussions with providers and other strategies. For providers, KTE outcomes may be improved through local opinion leaders, electronic reminders, multifaceted strategies and other approaches. Policy decisions relevant to PTB may best be informed through the use of evidence briefs, deliberative dialogues, the SUPPORT tools for evidence-informed policymaking and other strategies. Our recommendations for research addressed knowledge gaps in regard to partner engagement, applicability and context, implementation strategy research, monitoring and evaluation, and infrastructure for sustainable KTE efforts. CONCLUSIONS:Evidence-based KTE, using strategies appropriate to each stakeholder group, is essential to any effort to improve health at the population level. PTB stakeholders should be fully engaged in KTE and programme planning from its earliest stages, and ideally before planning begins.
10.1186/s12961-017-0238-0
Perceptions of Parents With Preterm Infants Hospitalized in Singaporean Neonatal Intensive Care Unit.
Yang Yen Yen,He Hong-Gu,Lee Soke Yee,Holroyd Eleanor,Shorey Shefaly,Koh Serena S L
The Journal of perinatal & neonatal nursing
Perceptions of parents with preterm infants who were hospitalized in a Singapore-based neonatal intensive care unit were observed. Convenience sampling method was used to recruit 8 parents of preterm infants. Semistructured face-to-face in-depth interviews were used to collect data between November 2013 and February 2014. Data were analyzed using thematic analysis. Four themes were identified: "negative emotions versus positive emotions," "finding ways forward," "nature of support received from various sources," and "need more informational and professional support." Parents of preterm infants experienced a multitude of emotions that varied from shock and sadness to excitement and anticipation through their babies' birth, hospitalization, and impending discharge. These parents adopted several strategies to cope with their birth and subsequent infant hospitalization. While their neonatal intensive care unit (NICU) experience was perceived as positive for most parents, some suggestions were made to improve on the information provided and professional care. This study provides evidence to health care professionals in addressing parents' negative emotions and coping abilities in practice. Emotional and informational support for parents is important for them to be more competent in coping with the hospitalization of their newborn in the NICU.
10.1097/JPN.0000000000000239
Social media and online safety practices of young parents.
Journal of information science
Studies of parents' online safety concerns typically centre on information privacy and on worries over unknown third parties preying on children, whereas investigations into youth perspectives on online safety have found young people to focus on threats to safety or reputation by known individuals. The case of youth who are themselves parents raises questions regarding how these differing perspectives are negotiated by individuals who are in dual roles as youth and parents. Using interview and ethnographic observation data from the longitudinal Young Parent Study in British Columbia, Canada, this analysis investigates social media and online safety practices of 113 young parents. Online safety concerns of young parents in this study focused on personal safety, their children's online privacy and image management. These concerns reflect their dual roles, integrating youth image and information management concerns with parental concerns over the safety and information privacy of their own children.
10.1177/01655515211053808
Influence of Social Media Uses and Gratifications on Family Health among U.S. Parents: A Cross-Sectional Study.
International journal of environmental research and public health
Some research suggests that parents on social media have access to greater social support and health information. However, evidence also connects parental social media use to negative outcomes including increased parental stress, depression, and distraction. Using the uses and gratification theory, this study goes beyond measures of parents' individual mental health and explores social media use and its association with family well-being. Family health outcomes were predicted to vary with parents' use and gratifications of social media, with parents who use social media primarily for information and connection scoring higher on family health and parents who used social media for entertainment scoring worse on family health. The sample included 482 heterosexual married or cohabiting partners recruited through a Qualtrics panel. All participants were parents of children ages of 3-13, with mothers and fathers each completing the survey. Findings indicated that fathers' use of social media for entertainment and connecting with family and friends was associated with better family well-being and health resources ( < 0.01). However, mothers' use of social media did not have a statistically meaningful relationship with family health variables. There was no evidence that parental social media use was associated with negative family health outcomes. Longitudinal data is needed to determine the temporal relationship between social media use and family health. Public health professionals interested in improving family health may consider how to better reach fathers on social media to increase health resources.
10.3390/ijerph20031910
The experience of fathers whose infants were hospitalized in Neonatal Intensive Care Unit in South Korea: A scoping review.
Journal of pediatric nursing
PROBLEM:The purpose of this scoping review was to map and organize the previous studies conducted among fathers whose infants experienced admission to neonatal intensive care units (NICUs) in South Korea. ELIGIBILITY CRITERIA:A scoping review was conducted based on Arksey and O'Malley using the JBI template. The review was described by PRISMA-ScR. The studies were reviewed through five electronic databases (PubMed, CINAHL, Web of Science, RISS and KMbase) since 1996. Each study was analyzed, extracted, and summarized into the following domains: general characteristics (language, design, data collection methods, intervention, data collection site, and time) and fathers' characteristics (types of fathers, mean age, variables related to the fathers, and measurements). SAMPLE:A total of 290 studies were identified after screening titles and abstracts, and 32 full-text articles were retrieved for eligibility. Finally, 15 articles were included in the review. RESULTS:Four themes were derived after review: paternal stress, paternal attachment, fathers' adaptation, and fathers' support needs. CONCLUSIONS:Infants' hospitalization in NICUs causes stress for fathers but they overcome difficulties and play multiple roles as guardians, caregivers, and decision-makers of their spouses and infants over time. Paternal attachment increases significantly after participating in tactile and educational interventions. Fathers rely on nurses and they want to receive support from nurses. IMPLICATIONS:It is necessary for NICU nurses to understand and support fathers whose infants are hospitalized in NICUs. Medical institutions should provide nursing interventions and education for fathers to relieve their stress, help their adaptation, and improve attachment.
10.1016/j.pedn.2023.03.015
Learning to parent from Google? Evaluation of available online health evidence for parents of preterm infants requiring neonatal intensive care.
Dol Justine,Richardson Brianna,Boates Talia,Campbell-Yeo Marsha
Health informatics journal
The study aim was to identify and evaluate the reliability and quality of online resources for parents of preterm infants seeking health information about their infant using the DISCERN tool and Health on Net code. An Internet search ( www.google.com ) was used to identify websites for parents of preterm infants on their infants' health and health issues. For each search, the top 100 "hits" were downloaded, yielding 1200 websites. After reviewing websites for exclusion criteria and duplicates, 197 websites remained and were analyzed. According to the DISCERN tool, the websites had a moderate reliability score (mean = 29.88, standard deviation = 4.88, range: 18-40), moderate treatment score (mean = 24.15, standard deviation = 5.79, range: 10-35), and moderate overall quality score (mean = 3.41, standard deviation = 0.89, range: 1-5). Only 24 (12.2%) websites had current Health on Net code approval and no other websites met full eligibility for certification. Overall, the reliability and quality of information available online to parents of preterm infants is lacking.
10.1177/1460458217752564
"Doctors can read about it, they can know about it, but they've never lived with it": How parents use social media throughout the diagnostic odyssey.
Journal of genetic counseling
Parents of children with undiagnosed conditions struggle to obtain information about how to treat and support their children. It can be particularly challenging to find communities and other parents who share their experiences and can provide emotional and informational support. This study sought to characterize how parents use social media, both throughout the diagnostic odyssey and post-diagnosis, to meet their informational, social, and emotional support needs. We conducted qualitative semi-structured interviews with 14 parents from the Stanford site of the Undiagnosed Diseases Network (UDN), including five whose children had received a diagnosis through study participation. Interview recordings were analyzed using inductive, team-based coding and thematic analysis based in grounded theory using Dedoose qualitative analysis software. Through this process, we identified four key themes related to social media use. First, parents struggled to find the "right" community, often seeking out groups of similar patients based on symptoms or similar conditions. Second, though they found much valuable information through social media about caring for their child, they also struggled to interpret the relevance of the information to their own child's condition. Third, the social support and access to other patients' and families' lived experiences were described as both highly valued and emotionally challenging, particularly in the case of poor outcomes for similar families. Finally, parents expressed the need to balance concerns about their child's privacy with the value of transparency and data sharing for diagnosis. Our results suggest that the needs and experiences of undiagnosed patients and families differ from those with diagnosed diseases and highlight the need for support in best utilizing social media resources at different stages of the diagnostic odyssey.
10.1002/jgc4.1438
Social networking sites: a new source of child feeding information for parents in Thailand.
Health promotion international
Social networking sites (SNSs) provide opportunities for health and nutrition communication. Data are lacking on whether these SNSs influence Thai parent's food provisioning to young children. In the current study, we examined the prevalence and characteristics of Thai parents who reported participating in child food and nutrition-SNSs and investigated the association between participation in these sites and parents' perceptions and feeding practices. A sample of 379 Thai parents completed a survey about the use of child food and nutrition-SNSs, and feeding practices and child eating behavior. Around 70% of participants, especially female millennials with their first child, have participated in SNSs that provide information about children's diets. High engagement was more common among younger and less educated participants, as well as rural dwellers and those with abnormal body mass index. Among these SNSs' participants, those with higher engagement had higher levels of trust in the nutritional information shared on SNSs. Further analyses showed that parents who have joined these sites had positive associations with not only providing children with more fresh fruits and vegetable but also more processed meats. Further investigations are needed to explore the information these SNSs provided and what influences they have on parents' perceptions around feeding children.
10.1093/heapro/daab133
Online information use on health/illness by relatives of hospitalized premature infants.
Revista brasileira de enfermagem
OBJECTIVE:To analyze the use of online information on health/illness by relatives of premature infants admitted to the Neonatal Intensive Care Unit. METHOD:Exploratory, qualitative study conducted at a Neonatal Intensive Care Unit from a University Hospital in the state capital of southern Brazil, with 33 relatives of hospitalized premature infants. The data were collected through a semi-structured interview and were submitted to thematic analysis, with the aid of the software Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires (IRAMUTEQ®). RESULTS:From the data analysis, two thematic categories emerged: Online information on health/illness researched by relatives; and Online sources of information consulted by relatives. FINAL CONSIDERATIONS:Health professionals need to consider the use of online information by relatives in the care process, adding it in their practice in relation to the informational needs presented, and stimulating spaces for dialogue about the data found.
10.1590/0034-7167-2018-0030
Smartphone and Internet Preferences of Parents: Information Needs and Desired Involvement in Infant Care and Pain Management in the NICU.
Orr Talia,Campbell-Yeo Marsha,Benoit Britney,Hewitt Brenda,Stinson Jennifer,McGrath Patrick
Advances in neonatal care : official journal of the National Association of Neonatal Nurses
BACKGROUND:Despite an abundance of research that identifies the benefits for both parent and child when parents are actively involved in their infant's care, challenges related to the best methods to engage families persist. PURPOSE:To conduct a feasibility study that aims to understand the preferences of smartphone and Internet use by parents of infants admitted to the neonatal intensive care unit (NICU) related to information seeking and active participation in infant care, with a focus on pain management interventions. METHODS:A paper-based survey was distributed to 90 parents in a tertiary-level NICU from September to November 2013. RESULTS:Response rate was 80% (72 of the 90). Ninety-seven percent accessed the Internet daily, 87% using their smartphone, and ranked it as an important source of NICU information (81%), more than books (56%) and brochures (33%). Participants reported a desire to have more information on how they could provide general comfort (96%), as well as greater participation in comforting their baby during painful procedures (94%). IMPLICATIONS FOR PRACTICE:Parents in the NICU want more information and greater involvement in their infant's care and pain management and place a higher value on the Internet compared with traditional resources. IMPLICATIONS FOR RESEARCH:Researchers and clinicians should work together to determine the quality of online resources to better support and evaluate parent use of the Internet as a health information resource. Future studies should examine parental preference regarding the optimal balance between online sources and face-to-face interactions.
10.1097/ANC.0000000000000349
Fathers' perception of information received during their infants' stay at a neonatal intensive care unit.
Ignell Modé R,Mard E,Nyqvist K H,Blomqvist Y T
Sexual & reproductive healthcare : official journal of the Swedish Association of Midwives
OBJECTIVE:To explore fathers' perception of information received during their infants' care at a neonatal intensive care unit (NICU). METHODS:An inductive, qualitative and descriptive study. Eight fathers in two units were interviewed. The infants' gestational age at birth ranged between 23 and 36 weeks. Data were collected through semi-structured, individual interviews and were analyzed by qualitative content analysis. RESULTS:Three categories were identified: perception of information, perception of the source of information, and circumstances influencing the perception of information. Information had an important impact; comprehensible and adequate information increased the fathers' knowledge, which generated a sense of control. Early information about the infant's care was particularly important and positively affected father and infant bonding. CONCLUSION AND PRACTICAL IMPLICATIONS:Ensuring a high quality of information is an important task for NICU staff. Fathers' perception of the quality of information depended on the contents of the information and how it was conveyed. Comprehensible information at the onset of the infant's hospital stay increased the fathers' sense of security, and made them feel in control. It is important that the staff strive to identify what information the father requires, and prevent situations when fathers feel uncertainty about what the staff expect from them.
10.1016/j.srhc.2014.05.001
Use of Social Media by Fathers of Premature Infants.
Kim Hyung Nam,Wyatt Tami H,Li Xueping,Gaylord Mark
The Journal of perinatal & neonatal nursing
Although parents of premature infants experience many challenges when transitioning home from the neonatal intensive care unit, healthcare providers and social support systems tend to focus on mothers and infants rather than fathers. Unfortunately, very little is known about paternal concerns and needs as compared with maternal ones. The lack of understanding about paternal needs may lead to inadequate designs of neonatal intensive care unit family support programs with less involved fathers, all of which contribute to increased burdens on mothers and poor health outcomes for their infants. Although information technology (IT) might have the potential to increase support for the fathers of preterm infants, only a few studies have examined systematically how IT applications can be beneficial. This study aims to advance the understanding of needs and concerns of fathers with preterm infants and how fathers use the IT applications (eg, social networking Web sites) to support themselves. We observed qualitatively various social networking Web sites (ie, 29 Web sites) where fathers share their experiences about preterm infants. We discovered that fathers used various social media to discuss their concerns and, in turn, obtained informational, companionship, and emotional supports. On the basis of our analysis, we provide insights into a father-centered technology intervention design.
10.1097/JPN.0000000000000214