Empowerment of Parents in the Intensive Care: A journey discovering parental experiences and satisfaction with care

The aim of this thesis – the EMPATHIC studies – was to develop and implement validated parent satisfaction questionnaires for pediatric and neonatal intensive care units. Part I presents the general introduction, which justifies the construction, validation, and utilization of parent satisfaction instruments. Part II provides a review about the few existing parent and family satisfaction instruments. A theoretical framework incorporating family-centered care, parental needs and experiences, as well as parent satisfaction are described. Part III describes three explorative studies conducted to identify the parental and professionalist's experiences related to intensive care services. First, an interview study among parents of 41 children revealed 63 sub-themes divided into six major themes. Second, a Delphi study among 364 healthcare professionals identified and prioritized 78 meaningful items of pediatric intensive care services. Third, a survey study among 559 parents identified the most important care items. Part IV presents the differences of perceptions between parents and healthcare professionals by comparing the results of the Delphi and the survey studies. Parents rated 31 items as more important than the professionals. Ten of these were related to communication. Caregivers rated 12 items as more important than the parents. A comparable method among parents and professionals of a neonatal intensive care unit revealed that parents rated 25 of 92 items as significantly more important than did the professionals. Two of these were related to medication administration. Caregivers rated seven items as more important. Part V considers two validation studies of the EMPATHIC and EMPATHIC-N questionnaires. The psychometric properties of both questionnaires were satisfactory. Several issues in pediatric intensive care were identified as being below acceptable standards, such as having daily talks with the physician, the physicians preparing the parents about the children's discharge, and the noise levels in the units. For the neonatal intensive care, low ratings were given to the physician's information about expected health outcomes, the distraction of receiving the same information from the physicians and the nurses, and the possibilities for parents to be actively involved in decision-making processes. Part VI discusses the overall results of the EMPATHIC studies. The measures, meanings, and memories of satisfaction are highlighted including the utilization of validated parental satisfaction questionnaires. Finally, future research directives are provided

South African critical care nurses' views on end-of-life decision-making and practices.

BACKGROUND: Care of patients at the end-of-life (EOL) may be influenced by the experiences, attitudes and beliefs of nurses involved in their direct care. AIM: To investigate South African critical care nurses' experiences and perceptions of EOL care. DESIGN: Cross-sectional survey. METHODS: South African critical care nurses completed a modified version of the 'VENICE' survey tool. Data were collected concerning: attitudes towards EOL care; involvement in EOL decision-making; and beliefs about EOL practices. RESULTS: Of 149 surveys distributed, 100 were returned (response rate 67%). Seventy-six percent stated that they had had direct involvement in EOL care of patients, but a minority (29%) had participated in EOL decision-making processes. Whilst most nurses (86%) were committed to family involvement in EOL decisions, less than two thirds (62%) reported this as routine practice. When withdrawing treatment, around half (54%) of the respondents indicated they would decrease the inspired oxygen level to room air, and the majority (84%) recommended giving effective pain relief. Continued nutritional support (84%) and hydration (85%) were advocated, with most nurses (62%) indicating that they were against keeping patients deeply sedated. Most respondents (68%) felt patients should remain in intensive care at the end of life, with the majority (72%) supporting open-visiting, no restriction on number of family members visiting (70%), and the practising of religious or traditional cultural EOL rituals (93%). CONCLUSIONS: The involvement of Johannesburg critical nurses in EOL care discussions and decisions is infrequent despite their participation in care delivery and definite views about the process. RELEVANCE TO CLINICAL PRACTICE: Use of formal guidelines and education is recommended to increase the nurses' involvement in and their confidence in participating in EOL decisions. Educators, managers, senior nurses and other members of the multi-disciplinary team should collaborate to enable critical care nurses to become more involved in EOL care

A quest for an integrated management system of children following a drowning incident: A review of the literature

Purpose: Management of children following a drowning incident is based on specific interventions which are used in the prehospital environment, the emergency department (ED) and the Paediatric Intensive Care Unit (PICU). This paper presents a review of the literature to map and describe the management and interventions used by healthcare professionals when managing a child following a drowning incident. Of specific interest was to map, synthesise and describe the management and interventions according to the different clinical domains or practice areas of healthcare professionals. Design and Methods: A traditional review of the literature was performed to appraise, map and describe information from 32 relevant articles. Four electronic databases were searched using search strings and the Boolean operators AND as well as OR. The included articles were all published in English between 2010 and 2022, as it comprised a timeline including current guidelines and practices necessary to describe management and interventions. Results: Concepts and phrases from the literature were used as headings to form a picture or overview of the interventions used for managing a child following a drowning incident. Information extracted from the literature was mapped under management and interventions for prehospital, the ED and the PICU and a figure was constructed to display the findings. It was evident from the literature that management and interventions are well researched, evidence-informed and discussed, but no clear arguments or examples could be found to link the interventions for integrated management from the scene of drowning through to the PICU. Cooling and/or rewarming techniques and approaches and termination of resuscitation were found to be discussed as interventions, but no evidence of integration from prehospital to the ED and beyond was found. The review also highlighted the absence of parental involvement in the management of children following a drowning incident. Practice Implications: Mapping the literature enables visualisation of management and interventions used for children following a drowning incident. Integration of these interventions can collaboratively be done by involving the healthcare practitioners to form a link or chain for integrated management from the scene of drowning through to the PICU

Echocardiography parameters used in identifying right ventricle dysfunction in preterm infants with early bronchopulmonary dysplasia: A scoping review

Background Bronchopulmonary Dysplasia (BPD) is a chronic condition that affects preterm infants and is associated with long-term complications. Haemodynamic effects of BPD can lead to right ventricular (RV) dysfunction.ObjectiveTo synthesise and map the evidence of echo parameters used in identifying RV dysfunction in the first two weeks-after-birth (WAB) of preterm infants with early BPD.Information SourcesThis scoping review included the databases: Medline, CINAHL, PubMed, EMBASE, Scopus, ProQuest, Web of Science, Cochrane Library, JBI Evidence-Based Practise and Gray Literature.Search StrategyThe search utilised Boolean operators and descriptors registered in Medical Subject Headings.Inclusion and exclusion criteriaIncluded were studies utilising echo parameters to examine RV function in preterm infants with early BPD in the first two WAB.Synthesis of resultsThe results are presented as a map of the extracted findings in a tabular format with a narrative summary.ResultsEight studies were included. Differences were observed in the number and timing of echo scans performed in the first two WAB and the variations in the echo parameters used to compare preterm infants with and without early BPD. Only echo scans performed at the end of the first WAB, demonstrated significant differences in the echo parameters measurements between preterm infants with and without BPD. Studies using RV Myocardial Performance Index (MPI) to identify RV-dysfunction associated with early BPD demonstrated similar findings. The Pulsed-Wave Doppler technique identified differences in RV-MPI between preterm infants with and without BPD, while Tissue-Doppler-Imaging did not demonstrate similar results. Speckle tracking can measure strain (S) and strain rate (SR) and diagnose RV-dysfunction. However, the findings of studies that utilised speckle tracking varied. Finally, two of the included studies added blood tests to their diagnostic model of early BPD, which was able to demonstrate significant differences in blood test results between BPD-affected and control preterm infants.ConclusionBPD could adversely affect the myocardium function of the RV; these negative influences can be captured in the first two WAB. However, there are still knowledge gaps regarding the appropriate number, timing and the most suitable echo parameters to assess RV function

A study protocol to develop and test an e-health intervention in follow-up service for intensive care survivors' relatives

Background: The negative impact on long-term health-related outcomes among relatives of critically ill patients in the intensive care unit (ICU) has been well described. High-quality ICU specialized follow-up care, which is easily accessible with digital innovation and which is designed by and with relevant stakeholders (i.e., ICU patients' relatives and nurses), should be considered to reduce these impairments in the psychological and social domains. Aim: The programme's aim is to develop and test an e-health intervention in a follow-up service to support ICU patients' relatives. Here, the protocol for the overall study programme will be described. Study Design: The overall study comprises a mixed-methods, multicentre research design with qualitative and quantitative study parts. The study population is ICU patients' adult relatives and ICU nurses. The main outcomes are the experiences of these stakeholders with the newly developed e-health intervention. There will be no predefined selection based on age, gender, and level of education to maximize diversity throughout the study programme. After the participants provide informed consent, data will be gathered through focus groups (n = 5) among relatives and individual interviews (n = 20) among nurses exploring the needs and priorities of a digital follow-up service. The findings will be explored further for priority considerations among members of the patient/relative organization (aiming n = 150), which will serve as a basis for digital prototypes of the e-health intervention. Assessment of the intervention will be followed during an iterative process with investigator-developed questionnaires. Finally, symptoms of anxiety and depression will be measured with the 14-item Dutch version of the ‘Hospital Anxiety and Depression Scale’, and symptoms of posttraumatic stress will be measured with the 21-item Dutch version of the ‘Impact of Events Scale-Revised’ to indicate the effectiveness of digital support among ICU patients' relatives. Relevance to Clinical Practice: The e-health intervention to be developed during this research programme can possibly bridge the gap in integrated ICU follow-up care by providing relevant information, self-monitoring and stimulating self-care among ICU patients' relatives

A roadmap for paediatric and neonatal critical care nursing science in Europe: Engage, action and impact

Guest editoria

Perceptions of parents, nurses, and physicians on neonatal intensive care practices

OBJECTIVE: To identify satisfaction with neonatal intensive care as viewed by parents and healthcare professionals and to explore similarities and differences between parents and healthcare professionals. STUDY DESIGN: A 3-round Delphi method to identify neonatal care issues (round 1) and to determine the importance of these issues (rounds 2 and 3) was conducted among nurses (n = 84) and physicians (n = 14), followed by an exploratory survey among parents (n = 259). Main outcome measures were 92 neonatal care-related items. RESULTS: Sixty-eight nurses and 13 physicians completed all 3 rounds. The first round yielded 419 neonatal care related statements, which were clustered into 92 items. The survey was completed by 148 (57%) parents. Parents rated 25 of 92 care items significantly higher than did the professionals (effect size of Cohen's d, 0.31 to 1.14, P <or= .02). Two items related to medication administration had the largest effect size. Professionals rated 7 items significantly higher than didparents (Cohen's d, -0.31 to -0.58, P <or= .04). One of these was assigning a physician and a nurse to the parents. Three were related to multicultural care. CONCLUSIONS: This study revealed disparities between parents and neonatal intensive care unit staff on a number of care issues reflecting incongruity in rec