Parental help-seeking behaviour for, and care of, a sick or injured child during the COVID-19 pandemic: a European online survey

BACKGROUND: Globally, the COVID-19 pandemic had a huge impact on patients and healthcare systems. A decline in paediatric visits to healthcare settings was observed, which might have been due to lower incidence of injury and infectious illness, changes in healthcare services and parental concern. The aim of our study was to examine parental experiences of help-seeking for, and care of, a sick or injured child during COVID-19 lockdown periods in five European countries with different healthcare systems in place. METHODS: An online survey for parents with a child with any kind or illness of injury during COVID-19 lockdowns was circulated through social media in five European countries: Italy, Spain, Sweden, the Netherlands, and the United Kingdom. Parents living in one of these countries with self-identification of a sick or injured child during COVID-19 lockdown periods were eligible to fill in the survey. Descriptive statistics were used for the level of restrictions per country, children's characteristics, family characteristics and reported help-seeking behaviour of parents prior to the lockdown and their real experience during the lockdown. The free text data was subjected to thematic analysis. RESULTS: The survey was fully completed by 598 parents, ranging from 50 to 198 parents per country, during varying lockdown periods from March 2020 until May 2022. Parents who completed the survey were not deterred from seeking medical help for their sick or injured child during the COVID-19 pandemic. This finding was comparable in five European countries with different healthcare systems in place. Thematic analysis identified three main areas: parental experiences of access to healthcare, changes in parents' help-seeking behaviours for a sick or injured child during lockdowns, and the impact of caring for a sick or injured child during the lockdowns. Parents reported limited access to non-urgent care services and were anxious about either their child or themselves catching COVID-19. CONCLUSION: This insight into parental perspectives of help-seeking behaviour and care for a sick or injured child during COVID-19 lockdowns could inform future strategies to improve access to healthcare, and to provide parents with adequate information concerning when and where to seek help and support during pandemics

Pain in intensive care : assessments and patients’ experience

The aim of the thesis was to translate, psychometrically test, and further develop the Behavioral Pain Scale for pain assessment in intensive care and to analyze if any other variables (besides the behavioral domains) could affect the pain assessments. Furthermore, the aim was to explore the patients’ experience of pain within the intensive care. The Behavioral Pain Scale (BPS), consisting of the domains “facial expression,” “upper limbs,” and “compliance with ventilator/vocalization,” was translated andculturally adapted into Swedish and psychometrically tested in a sample of 20 patients(study I). The instrument was then further developed within one of the domains and tested for inter-rater reliability, discriminant validity, and criterion validity (study II). The method for analysis in both study I and II was a method specifically developed for paired, ordered, and categorical data. To describe and analyze the process of pain assessment, a General Linear Mixed Model was used to investigate what variables, besides the behaviors, could be associated with the observers’ own assessment of the patients’ pain (study III). Further, the patients’ experiences of pain when being cared for in intensive care were explored (study IV) through interviews with 16 participants post intensive care. Qualitative thematic analysis with an inductive approach was used for the analysis. The first psychometric tests of the BPS (study I) showed inter-rater reliability with agreement of 85%. For the discriminant validity, all domains, except “compliance with ventilator,” indicated discriminant validity. Therefore, in study II, a developed domain of “breathing pattern” was tested alongside the original version. The BPS showed discriminant validity for both the original and the developed version and an inter-rater reliability with agreement of 76-80%. Wheninspecting the respective domains there was a difference in discriminant validity between the original domain of “compliance with ventilation” and the developed domain of “breathing pattern,” showing higher values on the scale for the developed domain during turning. For criterion validity, the BPS showed a higher sensitivity than the observers, who on the contrary had a higher specificity.The General Linear Mix Model (study III) showed that heart rate could be associated with the observers’ assessments of pain. For the behavioral signs, the result indicated that breathing pattern was most associated with the observers’ pain assessment, whilst facial expression did not show any impact on the observers’ assessments. The patients’ experiences of pain (study IV) in intensive care were described as generating a need for control; they experienced a lack of control when pain was present and continuously struggled to regain control. The experience of pain was not only related to the physical sensation but also to psychological and social aspects, along with the balance in the care given, which was important to the participants. In conclusion, the translated and developed version of the Swedish BPS showed promising psychometric results in assessing pain in the adult intensive care patients. Still, other signs, besides behavioral, is possibly used when pain assessing and therefore information about and training in pain assessment are needed to enhance the assessments that are made. Also, the patients’ own experiences highlight the importance of individualizing and adapting pain assessment and treatment to the needs of each patient. Making them a part of the team could enhance their feeling of control, thereby supporting them in facing the experience of pain

Behavioral Pain Scale - translation, reliability, and validity in a Swedish context

Background: Assessing pain in the intensive care unit (ICU) is challenging. Due to intubation and sedation, communication can be limited. International guidelines recommend assessing pain with instruments based on behavioral parameters when critically ill patients are unable to self-report their pain level. One of the recommended instruments, the Behavioral Pain Scale (BPS), has shown good validity and reliability in international studies. The aim of this study was to translate and adapt the BPS for critically ill intubated and non-intubated patients in a Swedish ICU context and to assess inter-rater reliability and discriminant validity. Methods: The BPS (both for intubated and non-intubated patients) was translated and adapted into Swedish using a translation method consisting of ten steps. The Swedish version was then tested for inter-rater reliability and discriminant validity on 20 critically ill patients (10 intubated and 10 non-intubated) before and directly after a potentially painful procedure (repositioning Results: The Swedish version of the BPS showed inter-rater reliability with a percentage agreement of 85% when tested on a sample of critically ill patients. The instrument also showed discriminant validity between assessments at rest and after repositioning Conclusion: Results of the Swedish version of the BPS support its use in critically ill patients who cannot self-report their pain level. Still, additional studies are needed to further explore its reliability and validity in the Swedish ICU contex

Parental Access to Healthcare following Paediatric Surgery—The Precarious Role of Parents as Providers of Care in the Home

Access to healthcare can facilitate parents’ self-management of their children’s care. Healthcare access can be described as consisting of six dimensions: approachability, acceptability, affordability, availability, appropriateness, and aperture. The aim of this study was to analyse these dimensions of healthcare access experienced by parents caring for their children at home following paediatric surgery. The method-directed content analysis, conducted with the six-dimensional framework of access to healthcare as a guide, was used to analyse twenty-two interviews with parents of children treated with paediatric surgery. All six dimensions were represented in the results. Acceptability was the most frequent dimension, followed by appropriateness and approachability. Affordability, availability, and aperture were less represented. Although access to healthcare after paediatric surgery is generally appropriate and approachable, parents may experience insecurity in performing the self-management needed. Complementary forms of information provision, e.g., telemedicine, can be valuable in this regard

A cross-sectional study of career paths for Swedish registered nurses with a doctoral degree : When aspirations and possibilities collide

Registered nurses with a doctoral degree are important for the quality of care, nursing education, and nursing research. Still, postgraduate career paths are criticized for being too vague. To enable career path development, mapping of the current situation appears fundamental. The objective was therefore to chart the current professional positions and work conditions and to explore the future career aspirations of registered nurses with a doctoral degree in Sweden. A cross-sectional survey study was conducted including 118 participants, all nurses with a doctoral degree earned between 2016 and 2022. This study is reported in accordance with STROBE. The participants reported a significant change from hospital-based positions before doctoral studies, towards university-based positions after graduation. This is clearly in contrast to their expressed aspiration to hold a shared position, remaining in contact with the clinical context. In conclusion, a national collaboration is needed and wanted regarding career opportunities for registered nurses with a doctoral degree in Sweden. Furthermore, career paths within nursing science need to be established within the clinical context

Access to health care perceived by parents caring for their child at home supported by eHealth—a directed approach introducing aperture

Background: In recent years a variety of eHealth solutions has been introduced to enhance efficiency and to empower patients, leading to a more accessible and equitable health care system. Within pediatric care eHealth has been advocated to reduce emergency and hospital outpatient visits, with many parents preferring eHealth to physical visits following the transition from hospital to home. Still, not many studies have focused on access from the parental perspective. Therefore, the aim of the study was to analyze access to health care as perceived by parents when caring for their child at home, with conventional care supported by eHealth following pediatric surgery or preterm birth. Methods: Twenty-five parents who went home with their child following hospitalization and received conventional care supported by eHealth (a tablet) were interviewed in this qualitative study. Directed content analysis was used, guided by a framework for dimensions of access previously described as: approachability, acceptability, affordability, appropriateness, and availability. Results: All dimensions of access were present in the material with the dimensions of approachability, appropriateness and acceptability most frequently emphasized. The dimensions highlighted a strong acceptance of eHealth, which was perceived by the parents as beneficial, particularly access to communication with health care personnel familiar to them. The chat function of the tablet was often mentioned as positive. A new dimension was also identified: “aperture.” It is defined by the pathways by which communication is transmitted in cyberspace, and these pathways are not easily visualized for parents submitting information, therefore generating concerns. Conclusions: Parents generally experienced good access to the eHealth-supported health care. Describing access through its dimensions complemented previous descriptions of eHealth in pediatric care and gave new insights. As such, the new dimension of “aperture”, the indeterminate opening of pathways of communication reflecting the uncertainty of not comprehending cyberspace, could be further evaluated. The dimensional framework of access is recommended when evaluating eHealth in the future. Trial registration: ClinicalTrials.gov identifier: NCT04150120