Experience Of Neonatal Care Research Articles

Parents’ lived experience of support through their neonate’s end of life and grief journey: An interpretative phenomenology study

Medical and pharmacological advancements have influenced the ability to treat acutely ill neonates. However, complications of prematurity mean that death is unpreventable in some cases. The aim of this study was to explore parents’ lived experiences of end of life care and their perceptions of support needs during and following the death of their baby in neonatal intensive care units in the United Kingdom. A qualitative interpretative phenomenological analysis design was adopted. Unstructured interviews were undertaken with seven parents (five mothers and two fathers). Interpretative phenomenological analysis was used to analyze the data. Four themes emerged from the analysis: ‘the enormity of grief’, ‘redefining self and social relations’, ‘trying to survive’ and ‘routes to improved support’. Parents’ experiences of neonatal care after the death of their baby were variable but all narratives highlight a grief that is deep and overwhelming. The Neonatal Grief Sandstorm visual tool, developed from the findings, has potential to support bereavement conversations between health professionals and parents.

Parenting through place-of-care disruptions: A qualitative study of parents'experiences of neonatal care.

Neonatal care is complex, involving multiple people and technologies within a community of care. When preterm babies are cared for far from homeand/or transferred between units, the whole community of care (and particularly parent participation) is disrupted. Although previous studies have captured subjective experiences of parents, there has been little research exploring the material practices undertaken by parents as a consequence of place-of-care decisions, or the social organisation of those practices. As part of a wider study exploring optimal place-of-care, semistructured interviews were conducted between July 2018 and October 2019 with 48 parents (36 families) with one or more preterm babies (born at 27-31 weeks gestation) cared for in a neonatal unit in the last 12 months. We highlight parents'labour-intensive and stressful work to: (1) parent in the neonatal care community (an oversight role that goes beyond contemporary notions of 'involvement'); (2) create continuity amid place-of-care disruptions; and (3) adapt to the managerial logics of neonatal care settings. Our analysis focuses on the work generated by managerial systems that organise place-of-care decision-making and other efficiency-focused practices. Parents are absorbed into negotiating institutional systems and diverted from routine parenting activities. Those involved in the organisation and management of neonatal care should take account of how managerial systems impact parents'workload, ability to participate in their baby's community of care and, ultimately, on the wellbeing and development of babies and their families. The OPTI-PREM study embedded parents'experiences of neonatal care into the research, through a discrete workstream that employed qualitative methodology to capture parents'experiences-as reported in this paper. The OPTI-PREM project was also supported by a Bliss volunteer parent panel, which was involved in designing and overseeing the research. Bliss 'champion[s] the right for every baby born premature or sick to receive the best care by supporting families, campaigning for change and supporting professionalsand enabling life-changing research'(https://www.bliss.org.uk/about-us/about-bliss). A representative of Bliss is a co-author of this manuscript, and a parent representative (named in the Acknowledgements) provided feedback during its preparation.

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

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

The Swedish Neonatal Network for outcomes improvement

: A vision for Swedish neonatal care is that all newborn infants receive the care they need, when they need it, that the experience is excellent for all families, and that neonatal care is executed by the highest quality and safety standards. To support this vision, the Swedish Neonatal Quality Register (SNQ) was founded with a mission to provide stake holders, professionals and the public with data and knowledge that would stimulate quality improvement (QI), research and development in neonatal care. SNQ covers all infants admitted to all 37 neonatal units (level I–III) serving the approximately 115,000 annual births in Sweden. Quality indicators include capacity and availability (number of beds, staffing, equipment), process (interventions) and outcome (survival and morbidity) measures for medical as well as nursing care. To better understand how neonatal care is associated with long-term outcome, the results of a national follow-up program at 2- and 5½-year-of-age are also reported to SNQ. In addition, parental experiences of neonatal care have recently become an integrated part of the database. SNQ’s completeness and validity, especially for preterm infants, has been found to be excellent. SNQ is therefore used as a tool for benchmarking over time and between unit and regions. Robust data from more than 230,000 neonatal admissions are available. Besides stimulating a continuously increasing number of clinical research projects, the data from SNQ has been found useful by Swedish authorities, professional and stakeholder organizations, local hospital administrations, teachers, as well as by the attending team in the neonatal unit. The most recent development with daily data collection in >95% of all admissions opens for new and more dynamic insights into the course of several neonatal conditions, as well as for timely outreach of results.

Effect of expressed breast milk administration on pain response among newborns during heel lance procedure in a tertiary care hospital — A randomized controlled trial

Newborn’s pain is a great challenge to health professionals as well as to parents. Newborns are especially vulnerable to pain. The primary objective was to evaluate the effectiveness of expressed breast milk administration on pain response among newborns during heel lance procedure and the secondary objective was to find out association between selected sociodemographic variables and pain response among newborns during heel lance procedure. The research approach adopted was quantitative and the design was experimental - A randomized controlled trial. Sixty newborns after 48 to 72 hours of life who came to the Shalabham newborns screening unit for metabolic screening were selected according to the inclusion criteria. Samples were selected by using block randomization with fixed block size 4 and newborns divided into two groups, experimental and control group. Allocation concealment was done by using an opaque sealed envelope. The investigator, clinical data collected from the case record of the newborns and caregiver who came with newborns to Shalabham unit. After collecting clinical data, pain was measured by NIPS score 3 minutes before heel lance procedure for getting baseline data by an observer in both the groups by an observer. The investigator knows the newborns whether included in experimental or control group. Then for the experimental group, 5 ml expressed breast milk was given through gokarnam by the investigator and routine care was given by the staff nurse. For control group routine care given by staff nurse. After 1 minute performed heel lance procedure by a staff nurse who had adequate experience in neonatal care to minimize the variation in pain during the heel lance procedure, heel lance procedure was done using all sterile precautions and blood collected in the screening card and kept for drying process. The observer assessed the pain level of newborns by using NIPS score during heel lance procedure both experimental group and control group. After 30 minutes, pain level was reassessed by observer using NIPS score on experimental and control group and recorded. Results showed that the mean pain level was significantly improved in the experimental group (p<0.00) compared to the control group. Thus, it can be concluded that expressed breast milk administration is found to be effective in reducing pain during heel lance procedures.

Provider Perspectives on the Acceptability, Appropriateness, and Feasibility of Teleneonatology.

We aimed to measure provider perspectives on the acceptability, appropriateness, and feasibility of teleneonatology in neonatal intensive care units (NICUs) and community hospitals. Providers from five academic tertiary NICUs and 27 community hospitals were surveyed using validated implementation measures to assess the acceptability, appropriateness, and feasibility of teleneonatology. For each of the 12 statements, scale values ranged from 1 to 5 (1 = strongly disagree; 5 = strongly agree), with higher scores indicating greater positive perceptions. Survey results were summarized, and differences across respondents assessed using generalized linear models. The survey response rate was 56% (203/365). Respondents found teleneonatology to be acceptable, appropriate, and feasible. The percent of respondents who agreed with each of the twelve statements ranged from 88.6 to 99.0%, with mean scores of 4.4 to 4.7 and median scores of 4.0 to 5.0. There was no difference in the acceptability, appropriateness, and feasibility of teleneonatology when analyzed by professional role, years of experience in neonatal care, or years of teleneonatology experience. Respondents from Level I well newborn nurseries had greater positive perceptions of teleneonatology than those from Level II special care nurseries. Providers in tertiary NICUs and community hospitals perceive teleneonatology to be highly acceptable, appropriate, and feasible for their practices. The wide acceptance by providers of all roles and levels of experience likely demonstrates a broad receptiveness to telemedicine as a tool to deliver neonatal care, particularly in rural communities where specialists are unavailable. · Neonatal care providers perceive teleneonatology to be highly acceptable, appropriate, and feasible.. · Perceptions of teleneonatology do not differ based on professional role or years of experience.. · Perceptions of teleneonatology are especially high in smaller hospitals with well newborn nurseries..

Identifying research priorities in newborn medicine: a Delphi study of parents’ views

ObjectiveNeonatal conditions can have lifelong implications for the health and well-being of children and families. Traditionally, parents and patients have not been included in shaping the agenda for research and...

Survey of neonatal nursing: Staffing, education, and equipment availability in Rwanda

IntroductionResearch studies have repeatedly shown that better educated nurses provide safer and higher quality care. In Rwanda, neonatal nursing is not recognized as a nursing specialty and there is no consistent approach in neonatal education or training of nurses who work with newborn infants. PurposeThe purpose of the study was to describe existing neonatal nursing practices in Rwanda, specifically 1) orientation program content and orientation process; 2) nurses' education, skill levels and comfort with performing neonatal care; and 3) availability and use of medical equipment. MethodsA descriptive cross-sectional survey design was used. Data were collected from October through November 2017. A convenience sample of nurses and midwives was used; nurses and midwifes working in Rwandan neonatal care units (NCUs) were invited to participate and complete a questionnaire specifically designed for this study. ResultsA total of 99 participants representing all 47 Neonatal Care Units (including 2 neonatal Intensive care units-NICUs) in Rwanda completed the questionnaire. Seventy-six (76) were nurses, 19 were midwives, and 4 were nurse-midwives. A lack of consistency in orientation/training to the neonatal unit was evident with approximately 70% who felt that the orientation was not sufficient. Comfort level with skills depended on the type of procedure. Basic neonatal care procedures were reported as comfortable, however this level varied across the geographic regions. Some vital equipment was unavailable. For more than half the respondents there was no 24-h physician coverage available for back up. DiscussionThe findings of this exploratory descriptive study reveal that the majority of Rwandan nurses/midwifes had limited neonatal care experience. Orientation program content and duration varied across the country. Most included basic content but was not always sufficient when there was poor staffing or a lack of physician coverage. Procedures that were rarely performed were uncomfortable because there was no opportunity for practice. Competency demonstration not expected of most of the respondents. ConclusionsThere needs to be consistent education/training for neonatal nurses. Competency based education and practice performance should be developed. Further research needs to focus on staffing patterns, education/competencies of the nursing staff, and the direct impact on neonatal outcomes.

Provider Perspectives on the Acceptability, Appropriateness, and Feasibility of Teleneonatology

We aimed to measure provider perspectives on the acceptability, appropriateness, and feasibility of teleneonatology in neonatal intensive care units (NICUs) and community hospitals. Providers from five academic tertiary NICUs and 27 community hospitals were surveyed using validated implementation measures to assess the acceptability, appropriateness, and feasibility of teleneonatology. For each of the 12 statements, scale values ranged from 1 to 5 (1 = strongly disagree; 5 = strongly agree), with higher scores indicating greater positive perceptions. Survey results were summarized, and differences across respondents assessed using generalized linear models. The survey response rate was 56% (203/365). Respondents found teleneonatology to be acceptable, appropriate, and feasible. The percent of respondents who agreed with each of the twelve statements ranged from 88.6 to 99.0%, with mean scores of 4.4 to 4.7 and median scores of 4.0 to 5.0. There was no difference in the acceptability, appropriateness, and feasibility of teleneonatology when analyzed by professional role, years of experience in neonatal care, or years of teleneonatology experience. Respondents from Level I well newborn nurseries had greater positive perceptions of teleneonatology than those from Level II special care nurseries. Providers in tertiary NICUs and community hospitals perceive teleneonatology to be highly acceptable, appropriate, and feasible for their practices. The wide acceptance by providers of all roles and levels of experience likely demonstrates a broad receptiveness to telemedicine as a tool to deliver neonatal care, particularly in rural communities where specialists are unavailable. · Neonatal care providers perceive teleneonatology to be highly acceptable, appropriate, and feasible.. · Perceptions of teleneonatology do not differ based on professional role or years of experience.. · Perceptions of teleneonatology are especially high in smaller hospitals with well newborn nurseries..

Using arts-based digital storytelling in neonatal care to enhance nursing students’ empathy

The emotional challenges experienced by parents of infants admitted to the neonatal unit are well documented. Stories based on parents' narratives can be an effective method for nursing students to learn about parents' experiences and develop empathy for them. To explore the contribution of arts-based digital storytelling based on parental experiences of neonatal care to enhancing empathy in children's nursing students. A collection of digital stories based on parental narratives were developed using the ASPIRE (aim, storyboarding, population, implementation, release, evaluation) framework. A mixed-methods approach was used to evaluate the effects of three of those digital stories, whereby 67 children's nursing students completed questionnaires and seven of them were interviewed individually about the stories. The mix of illustrations, animation, voice and text was well received by participants, not only aiding their learning, but also eliciting an emotional response from them. However, some aspects of the digital stories were found to hinder learning and some participants questioned the power of digital stories. Despite this, overall, the use of digital storytelling was found to be engaging, hold students' interest and enable learning via their senses. Arts-based digital storytelling can convey the complexities of parents' emotional experiences in the neonatal unit, so that nursing students are better equipped to understand and empathise with them.

Evaluation of Neonatal Resuscitation Knowledge and Procedures According to the “Helping Babies Breathe” (HBB) Program by Qualified Health Care Staff at the Sikasso Hospital Level in Mali

Introduction: Perinatal asphyxia is one of the leading causes of perinatal death. According to the WHO, two thirds of these deaths can be prevented with simple and effective interventions. The HBB (Helping Babies Breathe) program provides effective care for asphyxiant newborns regardless of the level of care. Objective: The objective of our work was to assess the knowledge of neonatal resuscitation equipment and procedures according to the HBB program by qualified nursing staff at the level of referral health structures in the Sikasso region of Mali. Methodology: This is a multicenter cross-sectional survey over a period of 4 months. It was carried out in two maternities and two referral neonatal units in Sikasso. The target population studied was made up of the nursing staff involved in the reception and care of newborns in the delivery room, in postpartum suites and in neonatal departments. Results: Eighty percent (112/141) of targeted caregivers were interviewed. More than half (44%) had more than 6 years of experience in neonatal care. Only 27% had received training in neonatal resuscitation including HBB. The most cited materials used for resuscitation were the mucus aspirator (82%), the ventilation bag (67%) and the heated table (60%). The bestknown resuscitation procedures were airway aspiration (82%), mask ventilation (60%), and hypothermia control (48%). Conclusion: Knowledge of newborn resuscitation remains very insufficient in the reference structures in Sikasso. It is necessary to implement a strategic plan for continuous training of staff with periodic monitoring in health structures.

Exploring the impact of digital stories on empathic learning in neonatal nurse education

Within neonatal nurse education, learning to understand the compelling emotional experiences of parents following the birth of their premature baby is essential to give person-centred empathic care. A collection of digital stories informed by parents' experiences was created to use as a pedagogical tool for students and staff within the neonatal speciality. This study reports on an exploration of the value of these digital stories for the enhancement of empathic learning. Using the principles of narrative inquiry, a mixed-methods design comprising ‘point-of-view’, reflective exercises, interviews and a questionnaire distributed to nursing students and practice staff ascertained views of three digital stories. The participants evaluated the digital stories positively overall and it was clear they were an effective and innovative way to learn about emotional experiences of parents. Powerful emotional messages from parents enhanced awareness, understanding and insight into their affective experience. Within the context of narrative-based neonatal education, there is a place for digital storytelling as a pedagogical strategy informed by parent narratives, to teach students and staff about the emotional impact of the neonatal care experience. In turn, this can potentially lead to more empathic, person-centred care relating to the families of sick, vulnerable babies.

Former NICU Families Describe Gaps in Family-Centered Care.

Care and outcomes of infants admitted to neonatal intensive care vary and differences in family-centered care may contribute. The objective of this study was to understand families' experiences of neonatal care within a framework of family-centered care. We conducted focus groups and interviews with 18 family members whose infants were cared for in California neonatal intensive care units (NICUs) using a grounded theory approach and centering the accounts of families of color and/or of low socioeconomic status. Families identified the following challenges that indicated a gap in mutual trust and power sharing: conflict with or lack of knowledge about social work; staff judgment of, or unwillingness to address barriers to family presence at bedside; need for nurse continuity and meaningful relationship with nurses and inconsistent access to translation services. These unmet needs for partnership in care or support were particularly experienced by parents of color or of low socioeconomic status.

Nursing Children and Young People award winners revealed

This year’s winners looked at parental experiences of neonatal care and same-sex couples with adopted children

Using parent metaphors for learning about the neonatal care experience: An interpretive perspective.

This study focuses on how metaphors are used by parents who have had a premature baby to describe their neonatal care experience and how these can contribute to empathic learning of health professionals. In health, metaphors are commonly used to communicate and explain difficult topics. When patients tell their story, metaphor can be a means of expression from which we can learn about their experience of illness or hospitalisation. Limited research exits on how metaphor can improve our understanding of parent's emotional experience in neonatal care and subsequently inform education in this field. Employing narrative inquiry within an interpretive, constructivist paradigm, 20 narrative interviews with 23 parents of premature babies were analysed using a process of metaphor identification. Findings revealed common metaphors used to describe experience. Metaphor clusters used by parents in order of frequency were journeying, altered reality, darkness, breaking, connections, fighting, salvation and being on the edge. Parents widely used compelling and emotive metaphors to describe and express both difficult and challenging times as well as progression forward. Metaphors serve as a powerful way for health professionals to learn about the emotional experiences of parents and potentially enhance their empathic understanding.

Better Use of Data to improve parent Satisfaction (BUDS): protocol for a prospective before-and-after pilot study employing mixed methods to improve parent experience of neonatal care

IntroductionHaving a baby that requires neonatal care is stressful and traumatic. Parents often report dissatisfaction with communication of clinical information. In the UK neonatal care data are recorded daily using...

Neonatal pain: Knowledge and perception among pediatric doctors in Malaysia.

Inadequate pain management is linked to potential neurodevelopmental and behavioral problems. Sufficient knowledge in neonatal pain is required to facilitate optimal pain management. The aim of this study was therefore to assess the knowledge and perception of pain experienced by neonates requiring intensive care among pediatric doctors working in a level III neonatal intensive care unit in Malaysian hospitals. This was a cross-sectional study conducted over a period of 18months. A self-administered questionnaire assessing knowledge and perception regarding neonatal pain was used. Twenty-four hospitals participated in the study, with 423 respondents. The response rate was 85%. One hundred and ninety-seven respondents (47%) were aware of tools for neonatal pain assessment, but only 6% used them in daily practice. Doctors with >4years of experience in neonatal care had better awareness of available pain assessment tools (59.4% vs 40.9%, P = 0.001). Sixteen statements regarding knowledge were assessed. Mean score obtained was 10.5 ± 2.5. Consultants/specialists obtained a higher mean score than medical officers (11.9 vs 10.4, P < 0.001). More than 80% of respondents were able to discriminate painful from non-painful procedures. Clinicians involved in neonatal care, especially those with longer experience were knowledgeable about neonatal pain. Gaps between knowledge and its application, however, remain. Implementation of clinical guidelines to improve the quality of assessment and adequate pain management in neonates is recommended.

Emotion work in qualitative research: interviewing parents about neonatal care.

'Emotion work' is a term used to describe the emotional responses that may arise in qualitative research exploring difficult experiences. Parents' experiences of neonatal care can raise sensitive issues during interviews, which may lead to emotional responses. To reflect on an interpretive study involving narrative interviews with parents of preterm neonates, to inform researchers about the potential emotive issues that may arise in such work. Reflection on interviews with parents of preterm neonates revealed areas for discussion relating to emotion work, the role of the researcher, emotional connections and empathic interviewing. Consideration of these areas highlights the importance of reflexivity for researchers. Qualitative researchers undertaking narrative interviews should be prepared for emotive issues that arise and recognise the need for emotional intelligence. Achieving a balance between being an empathic, emotionally aware interviewer and remaining objective can be challenging. Strategies that researchers can use to address this balance and to manage the emotion work involved in research of this nature are provided.

A framework analysis of free-text data from the neonatal survey 2014

ObjectiveTo systematically analyse parents' free-text comments provided in a survey about their experiences of neonatal care. MethodsUsing framework analysis of free-text data from the survey, a thematic framework was developed for coding 3738 comments. Most themes had positive and negative subcategories. Comments within the most frequently coded themes were re-coded into sub-themes to provide a more detailed insight into parents' experiences. ResultsThree quarters of comments referred to the ‘care from staff’ (n = 2447) with the majority (81%) being positive. Of these comments, a large proportion were ‘general’ or about positive ‘staff behaviour/attitude’. The most frequently coded comments on parents' negative experiences focused on relationships formed with staff, specifically, information and communication (n = 734). ConclusionsNeonatal units wishing to understand how best to improve parents' experiences would benefit from including an open-ended question in surveys of parents and reviewing these alongside the quantitative data.

Creating stories for learning about the neonatal care experience through the eyes of student nurses: An interpretive, narrative study

BackgroundStorytelling is an increasingly well recognised and valued platform to learn about the human experience within healthcare. Little is known however about how stories can enhance understanding in neonatal care, a specialised field offering rich opportunities for learning. This study focuses on the creation of stories based on the experiences of student nurses to inform teaching and learning strategies in the neonatal field. ObjectivesThe study aimed to create stories from the narratives of student nurses working within the neonatal field and identify what key themes for learning emerged in order to develop a storytelling resource to share experiences with their peers. DesignAn interpretive, constructivist approach was used to collect, analyse and create stories from student nurse's experiences, in line with narrative inquiry. ParticipantsSix pre-registration children's nursing students were selected by purposive sampling. SettingsInterviews were undertaken within six weeks following placement completion in an agreed location. MethodsNarratives were obtained by semi-structured interviews. Narrative analysis and core story creation was undertaken to construct stories and key learning themes emerged which provided the pedagogical basis for subsequent digital resource development. FindingsKey themes emerged relating to the insight and observances of student nurses and the neonatal journey they had experienced, including the nature of neonatal care, experiences of the neonate and parents, the environment and their own learning transition. Preliminary peer evaluation of the storytelling resource revealed storytelling as an interesting and novel approach to teaching & learning, learning from ones' peers, preparation for practice and a valuable insight into a new specialist area. ConclusionsThe study has value to teaching and learning by enabling an appreciation of how narrative can be used to portray the experiences of learners. Findings also support an approach to analysing narrative to create stories for learning and inform subsequent digital resource development.