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.

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.

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.

Patients´ experiences of pain in the intensive care - The delicate balance of control.

AIM: To explore the patients´ experiences of pain when being cared for in the intensive care. DESIGN: An exploratory, qualitative design was chosen. METHOD: Interviews were performed with patients (October 2015-March 2017) within a week of post-intensive care (N = 16). Thematic analysis was used as method for analysis. RESULTS: The findings generated two themes - a lack of control and to struggle for control. Pain was described as overwhelming, both in body and mind and generating the experience of a lack of control, with feelings of incapacitation, isolation, and having their needs unmet. Feeling in control of the pain and thus in control of the situation was experienced as a constant struggle. Well-planned care, finding ways to handle the pain and good communication were all helpful in this struggle. CONCLUSION: The participants recalled their experience of pain in the ICU and control seems to be crucial for how pain is experienced. They experienced a lack of control due to not only the pain but also the treatment, which can be avoided by the nurse continuously evaluating and individualising the care. Balanced care, meeting the patients' needs and good communication helps the patient feel more in control when experiencing pain. IMPACT: The experience of pain is dependent on control for the intensive care patient. The nurse may help them gain control and thereby handle the experience of pain through including the patient, striving for better communication and implementing individualised care that continuously assesses and treats pain.

To assess patients pain in intensive care: developing and testing the Swedish version of the Behavioural Pain Scale.

OBJECTIVES: The Behavioural Pain Scale has previously been translated into Swedish and psychometrically tested. One of the domains- 'compliance with ventilation'- did not show equally as good psychometric proprieties as the other domains, which led to the question whether a development of that domain would be beneficial. This study aimed to develop the domain of 'breathing pattern' in the Swedish version of the Behavioural Pain Scale and then test the instrument for discriminant validity, inter-rater reliability and criterion validity. METHOD: The domain 'breathing pattern' was developed and included when the Swedish version of the Behavioural Pain Scale was psychometrically tested in 360 paired assessments. RESULTS: The instrument showed discriminant validity through a significant positive change on the scale before and during turning and inter-rater reliability with an absence of significant disagreement on the scale between the paired assessments. The developed domain had a better result in discriminant validity than the original domain. The instrument also showed higher sensitivity in discriminating pain compared to assessment without an instrument. CONCLUSION: The Swedish version of the Behavioural Pain Scale, with a developed domain for 'breathing pattern' showed to be a reliable instrument for pain assessment in the adult intensive-care patient.