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1.
Article in English | MEDLINE | ID: mdl-38326027

ABSTRACT

OBJECTIVE: To examine the providers' perceptions and experiences on implementation of video review (VR) of procedures in the neonatal intensive care unit (NICU). DESIGN: Qualitative study using semi-structured interviews with neonatal care providers about their experiences with VR. Interviews were audio-recorded, transcribed and thematically analysed using the data analysis software Atlas.ti V.22.2. SETTING: Providers working in the NICU of the Leiden University Medical Center were interviewed during implementation of VR. RESULTS: In total, 28 NICU staff members were interviewed. The interviewed providers appreciated VR and valued the focus on a safe learning environment. Five overarching themes were identified: (1) added value: providers reported that VR is a powerful tool for reflection on daily practice and serves as a magnifying glass on practice, provides a helicopter view and VR with nursing and medical staff together led to new insights and was seen as highly valuable; (2) preconditions and considerations: the existing culture of trust on the NICU positively influenced providers' perception; (3) adjustment: it was recommended to first let providers attend a VR session, before being recorded; (4) experiences with VR: suggestions were made by the providers regarding the preparation and organisation of VR and the role of the chair; (5) embedding VR: providers considered how to embed VR on the long-term while maintaining a safe learning environment and provided suggestions for expanding. CONCLUSION: Neonatal care providers appreciated the use of VR and provided viewpoints on how to implement VR successfully, which were used to develop a roadmap with recommendations.

2.
Article in English | MEDLINE | ID: mdl-36674269

ABSTRACT

The COVID-19 pandemic profoundly impacted the work of professionals who support people with intellectual disabilities. This study aimed to explore the experiences of outreach support staff supporting people with mild intellectual disabilities in the Netherlands during different phases of the pandemic between March 2020 and May 2021. Overall, seven outreach support staff from three intellectual disability services participated in this qualitative study. Using semi-structured interviews, participants were interviewed on three occasions between December 2020 and May 2021. A thematic analytical framework was used to analyze the interviews. Four overarching themes could be distinguished based on the data: (1) balancing between one's professional and personal life; (2) vaccination as both a stress reducer and a source of agitation; (3) service users: vulnerable versus resilient; and (4) contact with colleagues and service users. These themes provided valuable insights into the experiences of outreach support staff during different phases of the pandemic, both in the enduring impact of the pandemic and its measures on support staff, as well as in terms of how the pandemic and its preventive measures impacted their profession.


Subject(s)
COVID-19 , Intellectual Disability , Humans , Intellectual Disability/epidemiology , Pandemics , Netherlands/epidemiology , COVID-19/epidemiology , Qualitative Research
3.
Disabil Rehabil ; 45(24): 4122-4132, 2023 Dec.
Article in English | MEDLINE | ID: mdl-36398471

ABSTRACT

PURPOSE: Lockdowns due to the Covid-19 pandemic may have had a disproportionate impact on the daily lives of people with intellectual disabilities. Many of them had to deal with limited social contacts for an extended period. This study explores in depth how people with intellectual disabilities in the Netherlands experienced their daily lives, in particular due to lack of access to regular work activities. MATERIALS AND METHODS: Eight participants with intellectual disabilities were interviewed. Interpretative Phenomenological Analysis (IPA) was employed in conducting and analysing interviews. RESULTS AND CONCLUSIONS: Analysis yielded three overarching themes that are conceptually linked. Participants experienced a prolonged lack of social connections that resulted in experiences of social isolation and feelings of loneliness. This led to different kinds of struggles: either internal struggles involving negative thoughts or depressive feelings, or a perceived threat to their autonomous position in society. Meanwhile participants had to sustain their sense of self-worth in the absence of work activities. The findings emphasise the importance of social opportunities through the access to work activities for people with intellectual disabilities. Interventions are suggested to help reverse the increased social inequalities and enhance rehabilitation via work activities for people with intellectual disabilities.IMPLICATIONS FOR REHABLITATIONMore awareness may be raised among authorities, employers and the general public about the significant value people with intellectual disabilities attribute to meaningful social connections, in particular through work activities.Also, more awareness may be raised about the potential adverse effects of the loss of work activities and social connections on the quality of life of people with intellectual disabilities.Providing social support to others may help people with intellectual disabilities to construct social valued roles, either in or outside the work situation.Professionals and employers can support people with intellectual disabilities to find opportunities to provide social support to others.It is important to invest in sustainable and innovative post-pandemic community participation initiatives and particularly in accessible post-pandemic employment support, for example by organising paid in-company training placements.It is essential that professionals support people with intellectual disabilities to enhance their sources of resilience and coping strategies, that may have diminished as a result of the pandemic.


Subject(s)
COVID-19 , Intellectual Disability , Humans , Pandemics , Intellectual Disability/rehabilitation , Quality of Life , COVID-19/epidemiology , Communicable Disease Control
4.
Neonatology ; 119(2): 214-221, 2022.
Article in English | MEDLINE | ID: mdl-35184062

ABSTRACT

BACKGROUND: Obtaining ethically valid consent to participate in delivery room (DR) studies from parents facing an imminent premature birth can be challenging. This study aims to provide insight into parental experiences with and perceptions of consent for DR studies. METHODS: Semistructured interviews were conducted with parents of very and extreme preterm infants. Interviews were audio-recorded, transcribed, and analyzed using the qualitative data analysis software Atlas. ti V.8.4. RESULTS: Twenty-five parents were interviewed. Despite being in an emotional and stressful situation, most parents considered being approached for DR studies as valuable. According to parents, this was mostly due to appropriate timing and communication, compassion, and investigators not being obtrusive. Interviewed parents generally decided to accept or decline study participation based on perceived risk. Parents differed widely in how risk of specific study interventions was perceived, but agreed on the fact that parental consent is needed for DR studies that involve risk. There was no consensus among parents on deferred consent for DR studies running at our NICU. However, parents considered deferred consent appropriate for observational studies. Furthermore, it became clear that parental misunderstanding of various aspects of DR studies, including aims, the concept of randomization, and risk associated with specific interventions, was common. CONCLUSIONS: Insight into parental perceptions of consent for DR studies allowed us to determine areas where the validity of parental consent can be improved. Further research on parental perspectives for consent for DR studies will allow us to establish consent procedures that are considered both valid and valuable.


Subject(s)
Delivery Rooms , Infant, Newborn, Diseases , Female , Humans , Infant , Infant, Newborn , Infant, Premature , Parental Consent , Parents/psychology , Pregnancy
5.
Arch Dis Child Fetal Neonatal Ed ; 107(2): 156-160, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34413092

ABSTRACT

OBJECTIVE: The aim of this study was to determine the experience with, and the feasibility of, point-of-view video recordings using eye-tracking glasses for training and reviewing neonatal interventions during the COVID-19 pandemic. DESIGN: Observational prospective single-centre study. SETTING: Neonatal intensive care unit at the Leiden University Medical Center. PARTICIPANTS: All local neonatal healthcare providers. INTERVENTION: There were two groups of participants: proceduralists, who wore eye-tracking glasses during procedures, and observers who later watched the procedures as part of a video-based reflection. MAIN OUTCOME MEASURES: The primary outcome was the feasibility of, and the proceduralists and observers' experience with, the point-of-view eye-tracking videos as an additional tool for bedside teaching and video-based reflection. RESULTS: We conducted 12 point-of-view recordings on 10 different patients (median gestational age of 30.9±3.5 weeks and weight of 1764 g) undergoing neonatal intubation (n=5), minimally invasive surfactant therapy (n=5) and umbilical line insertion (n=2). We conducted nine video-based observations with a total of 88 observers. The use of point-of-view recordings was perceived as feasible. Observers further reported the point-of-view recordings to be an educational benefit for them and a potentially instructional tool during COVID-19. CONCLUSION: We proved the practicability of eye-tracking glasses for point-of-view recordings of neonatal procedures and videos for observation, educational sessions and logistics considerations, especially with the COVID-19 pandemic distancing measures reducing bedside teaching opportunities.


Subject(s)
COVID-19/epidemiology , Eye-Tracking Technology , Intensive Care Units, Neonatal , Internship and Residency/methods , Video Recording , Gestational Age , Humans , Infant, Newborn , Infant, Premature , Intubation/methods , Pandemics , Prospective Studies , Pulmonary Surfactants/administration & dosage , SARS-CoV-2
6.
Neonatology ; 118(6): 639-646, 2021.
Article in English | MEDLINE | ID: mdl-34628413

ABSTRACT

Less invasive surfactant administration (LISA) is an effective, minimally invasive technique of administering surfactant to infants with respiratory distress syndrome. While termed less invasive, LISA still requires airway instrumentation with direct laryngoscopy, thus may be considered painful. However, the issue of whether or not to routinely sedate infants for LISA remains contentious, with significant variation in practice between centres. Proponents for giving pharmacological analgesia and/or sedation predominantly focus on patient comfort during the procedure. However, those who favour non-pharmacological measures of pain management focus on the potential for procedural success without the risk of adverse events, such as respiratory depression and potentially the need for escalation to intubation, which may occur with pharmacological agents. The neonatal population who may benefit from LISA is varied. Due to this variety in presentation type, gestational age, and unit experience, there is a need to provide an individualized, tailored approach to sedation and analgesia for these infants. Using a blanket approach to sedation will lead to infants being exposed to sedative medications on the assumption of potential distress, rather than in response to signs of actual distress. This places the infant at risk of the adverse reactions, potentially without them ever having needed the beneficial effect of the medications. This seems an unnecessary risk. This article explores the ethical arguments pertaining to analgesia and sedation during the LISA technique, concluding that a standardized approach to the usage of pharmacological sedation is undesirable. Moreover, we maintain that procedural analgesia and sedation should be based on individualized, infant-centred assessment, rather than on a rigid, standardized approach.


Subject(s)
Pulmonary Surfactants , Respiratory Distress Syndrome, Newborn , Humans , Infant , Infant, Newborn , Infant, Premature , Laryngoscopy , Respiratory Distress Syndrome, Newborn/drug therapy , Surface-Active Agents
7.
Arch Dis Child Fetal Neonatal Ed ; 106(4): 346-351, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33514631

ABSTRACT

BACKGROUND: Recording of neonatal resuscitation, including video and respiratory parameters, was implemented for research and quality purposes at the neonatal intensive care unit (NICU) of the Leiden University Medical Center, and parents were offered to review the recording of their infant together with a neonatal care provider. We aimed to provide insight in parental experiences with reviewing the recording of the neonatal resuscitation of their premature infant. METHODS: This study combined participant observations during parental review of recordings with retrospective qualitative interviews with parents. RESULTS: Parental review of recordings of neonatal resuscitation was observed on 20 occasions, reviewing recordings of 31 children (12 singletons, 8 twins and 1 triplet), of whom 4 died during admission. Median (range) gestational age at birth was 27+5 (24+5-30+3) weeks. Subsequently, 25 parents (13 mothers and 12 fathers) were interviewed.Parents reported many positive experiences, with special emphasis on the value for getting hold of the start of their infant's life and coping with the trauma of neonatal resuscitation. Reviewing recordings of neonatal resuscitation frequently resulted in appreciation for the child, the father and the medical team. Timing and set-up of the review contributed to positive experiences. Parents considered screenshots/copies of the recording of the resuscitation of their infant as valuable keepsakes of their NICU story and reported that having the screenshots/video comforted them, especially when their child died during admission. CONCLUSION: Parents consider reviewing recordings of neonatal resuscitation as valuable. These positive parental experiences could allay concerns about sharing recordings of neonatal resuscitation with parents.


Subject(s)
Infant, Premature/psychology , Intensive Care Units, Neonatal , Parents/psychology , Resuscitation/psychology , Videotape Recording , Adaptation, Psychological , Adult , Female , Gestational Age , Humans , Infant, Extremely Premature , Infant, Newborn , Male , Middle Aged , Retrospective Studies , Young Adult
9.
Front Pediatr ; 8: 560, 2020.
Article in English | MEDLINE | ID: mdl-33042913

ABSTRACT

Video and physiological parameter recording of neonatal stabilization was implemented at the Neonatal Intensive Care Unit (NICU) of the Leiden University Medical Center. In order to improve documentation and the quality of care provided during neonatal transition, we implemented weekly plenary audits reviewing recordings of neonatal stabilization in 2014. In audits, provided care is reviewed, discussing, among others, mask technique, compliance to the prevailing local guideline, and clinical decision making and alternative treatment options. In this perspective, we argue that auditing neonatal stabilization is a valuable tool to improve patient safety and the quality of care provided during neonatal stabilization. We, therefore, report lessons learned and areas for improvement that could be identified and addressed during audits conducted at our NICU. Important areas for improvement were guideline compliance, documentation, the usage of medical devices, the conduct of delivery room studies, and clinical decision making. By reporting our experiences, we hope to encourage other NICUs to also implement regular audit meetings, fitting to their improvement needs.

10.
Arch Dis Child Fetal Neonatal Ed ; 105(6): 666-668, 2020 Nov.
Article in English | MEDLINE | ID: mdl-32616559

ABSTRACT

BACKGROUND: A respiratory function monitor (RFM) provides real-time positive pressure ventilation feedback. Whether providers use RFM during neonatal resuscitation is unknown. METHODS: Ancillary study to the MONITOR(NCT03256578) randomised controlled trial. Neonatal resuscitation leaders at two centres wore eye-tracking glasses, and visual attention (VA) patterns were compared between RFM-visible and RFM-masked groups. RESULTS: 14 resuscitations (6 RFM-visible, 8 RFM-masked) were analysed. The median total gaze duration on the RFM was significantly higher with a visible RFM (29% vs 1%, p<0.01), while median total gaze duration on other physical objects was significantly lower with a visible RFM (3% vs 8%, p=0.02). Median total gaze duration on the infant was lower with RFM visible, although not statistically significantly (29% vs 46%, p=0.05). CONCLUSION: Providers' VA patterns differed during neonatal resuscitation when the RFM was visible, emphasising the importance of studying the impact of additional delivery room technology on providers' behaviour.


Subject(s)
Attention , Medical Staff, Hospital/psychology , Monitoring, Physiologic/instrumentation , Positive-Pressure Respiration , Eyeglasses , Female , Humans , Infant, Newborn , Male , Resuscitation/instrumentation
11.
Arch Dis Child Fetal Neonatal Ed ; 105(3): 310-315, 2020 May.
Article in English | MEDLINE | ID: mdl-31427459

ABSTRACT

OBJECTIVE: To gain insight into neonatal care providers' perceptions of deferred consent for delivery room (DR) studies in actual scenarios. METHODS: We conducted semistructured interviews with 46 neonatal intensive care unit (NICU) staff members of the Leiden University Medical Center (the Netherlands) and the Hospital of the University of Pennsylvania (USA). At the time interviews were conducted, both NICUs conducted the same DR studies, but differed in their consent approaches. Interviews were audio-recorded, transcribed and analysed using the qualitative data analysis software Atlas.ti V.7.0. RESULTS: Although providers reported to regard the prospective consent approach as the most preferable consent approach, they acknowledged that a deferred consent approach is needed for high-quality DR management. However, providers reported concerns about parental autonomy, approaching parents for consent and ethical review of study protocols that include a deferred consent approach. Providers furthermore differed in perceived appropriateness of a deferred consent approach for the studies that were being conducted at their NICUs. Providers with first-hand experience with deferred consent reported positive experiences that they attributed to appropriate communication and timing of approaching parents for consent. CONCLUSION: Insight into providers' perceptions of deferred consent for DR studies in actual scenarios suggests that a deferred consent approach is considered acceptable, but that actual usage of the approach for DR studies can be improved on.


Subject(s)
Attitude of Health Personnel , Clinical Studies as Topic/ethics , Delivery Rooms/ethics , Informed Consent/ethics , Intensive Care Units, Neonatal/ethics , Adult , Aged , Clinical Studies as Topic/methods , Clinical Studies as Topic/psychology , Delivery Rooms/standards , Female , Humans , Informed Consent/psychology , Informed Consent/standards , Intensive Care Units, Neonatal/standards , Male , Middle Aged , Netherlands , Parents , Prospective Studies , Qualitative Research
12.
Front Pediatr ; 7: 294, 2019.
Article in English | MEDLINE | ID: mdl-31380327

ABSTRACT

Objective: Evaluate whether weekly audits of neonatal resuscitation using video and physiological parameter recordings improved guideline compliance and documentation in medical records. Study design: Neonatal care providers of the Neonatal Intensive Care Unit (NICU) of Leiden University Medical Center reviewed recordings of neonatal resuscitation during weekly plenary audits since 2014. In an observational pre-post cohort study, we studied a cohort of infants born before and after implementation of weekly audits. Video and physiological parameter recordings of infants needing resuscitation were analyzed. These recordings were compared with the prevailing resuscitation guideline and corresponding documentation in the medical record using a pre-set checklist. Results: A total of 212 infants were included, 42 before and 170 after implementation of weekly audits, with a median (IQR) gestational age of 30 (27-35) weeks vs. 30 (29-33) weeks (p = 0.64) and birth weight of 1368 (998-1780) grams vs. 1420 (1097-1871) grams (p = 0.67). After weekly audits were implemented, providers complied more often to the guideline (63 vs. 77%; p < 0.001). Applying the correct respiratory support based on heart rate and respiration, air conditions (dry vs. humidified air), fraction of inspired oxygen (FiO2), timely start of interventions and evaluation of delivered care improved. Total number of correctly documented items in medical records increased from 39 to 65% (p < 0.001). Greatest improvements were achieved in documentation of present providers, mode of respiratory support and details about transport to the NICU. Conclusion: Regular auditing using video and physiological parameter recordings of infants needing resuscitation at birth improved providers' compliance with resuscitation guideline and documentation in medical records.

14.
Arch Dis Child Fetal Neonatal Ed ; 104(5): F528-F534, 2019 Sep.
Article in English | MEDLINE | ID: mdl-30504441

ABSTRACT

OBJECTIVE: To assess benefits of recording and reviewing neonatal resuscitation as experienced by neonatal care providers. DESIGN: A qualitative study using semistructured interviews questioning neonatal care providers about their experiences with recording and reviewing neonatal resuscitation. Data were analysed using the qualitative data analysis software Atlas.ti V.7.0. SETTING: Neonatal care providers working at neonatal intensive care units (NICUs) of the Leiden University Medical Center, the Netherlands, and the University of Pennsylvania School of Medicine, USA, participated in this study. RESULTS: In total, 48 NICU staff members were interviewed. Reported experiences and attitudes are broadly similar for both NICUs. All interviewed providers reported positive experiences and benefits, with special emphasis on educational benefits. Recording and reviewing neonatal resuscitation is used for various learning activities, such as plenary review meetings and as tool for objective feedback. Providers reported to learn from reviewing their own performance during resuscitation, as well as from reviewing performances of others. Improved time perception, reflection on guideline compliance and acting less invasively during resuscitations were often mentioned as learning outcomes. All providers would recommend other NICUs to implement recording and reviewing neonatal resuscitation, as it is a powerful tool for learning and improving. However, they emphasised preconditions for successful implementation, such as providing information, not being punitive and focusing on the benefits for learning and improving. CONCLUSION: Recording and reviewing neonatal resuscitation is considered highly beneficial for learning and improving resuscitation skills and is recommended by providers participating in it.


Subject(s)
Intensive Care, Neonatal , Resuscitation , Video Recording/methods , Attitude of Health Personnel , Clinical Competence , Humans , Infant, Newborn , Intensive Care Units, Neonatal/standards , Intensive Care, Neonatal/methods , Intensive Care, Neonatal/standards , Qualitative Research , Quality Improvement/organization & administration , Resuscitation/methods , Resuscitation/standards , United States
15.
Arch Dis Child Fetal Neonatal Ed ; 103(3): F280-F284, 2018 May.
Article in English | MEDLINE | ID: mdl-29353257

ABSTRACT

Neonatal resuscitation is provided to approximately 3% of neonates. Adequate ventilation is often the key to successful resuscitation, but this can be difficult to provide. There is increasing evidence that inappropriate respiratory support can have severe consequences. Several neonatal intensive care units have recorded and reviewed neonatal resuscitation procedures for quality assessment, education and research; however, ethical dilemmas sometimes make it difficult to implement this review process. We reviewed the literature on the development of recording and reviewing neonatal resuscitation and have summarised the ethical concerns involved. Recording and reviewing vital physiological parameters and video imaging of neonatal resuscitation in the delivery room is a valuable tool for quality assurance, education and research. Furthermore, it can improve the quality of neonatal resuscitation provided. We observed that ethical dilemmas arise as the review process is operating in several domains of healthcare that all have their specific moral framework with requirements and conditions on issues such as consent, privacy and data storage. These moral requirements and conditions vary due to local circumstances. Further research on the ethical aspects of recording and reviewing is desirable before wider implementation of this technique can be recommended.


Subject(s)
Ethics, Medical , Intensive Care Units, Neonatal/ethics , Quality Assurance, Health Care/ethics , Resuscitation/ethics , Video Recording/ethics , Humans , Infant, Newborn , Infant, Premature , Intensive Care Units, Neonatal/standards
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