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The perspective of families with a child who is ventilator-dependent at home. A literature review.
(2017)
Objective:
We examined whether autonomic flexibility to experimentally presented stressors is reduced in somatic symptom disorder (SSD) as this would point to reduced vagal control as a proposed indicator of emotion regulation deficits.
Method:
In this experimental study, the influence of health-related and social stressors on subjective and physiological reactivity was investigated in 29 subjects with SSD without any medical condition SSD(mc−), 33 subjects with SSD with medical condition SSD(mc+) and 32 healthy controls at the age from 18 to 70 years. Self-report and physiological variables were measured before and after/during stressor exposure, using state ratings of symptom intensity, disability, tension and mood, heart rate (HR), and heart rate variability (HRV).
Results:
Overall, the tension increased and the mood worsened after exposure to stressors compared to pre-exposure. Compared to HC, the two SSD groups showed higher symptom intensity, disability, tension and worse mood. The SSD(mc−) group revealed higher HR than HC (p = .012, d = −0.77). Compared to pre-exposure, symptom impairment increased after social stressor exposure in SSD(mc−) (p < .001, d = 1.36). HRV-root mean square of successive differences (RMSSD) only decreased in HC during exposure (p = .003, d = −1.09), not in the SSD groups. The two SSD groups did not differ in their reactivity to stressors.
Conclusion:
HRV in SSD, seems to respond less flexibly to stressors, potentially reflecting overall physiological disturbance through reduced parasympathetic influence on HR. Stress reactivity in SSD(mc−) and SSD(mc+) do not seem to differ.
Habits are highly automated behaviors that have received renewed attention in addiction research. The Self-Report Habit Index (SRHI) is a widely used measure of habits. Two cross-sectional online studies aimed at validating a German version of the SRHI to assess two everyday health-risk behaviors: caffeine consumption and smartphone/tablet use. In both studies (N = 1310), the SRHI scales (one adapted for caffeine consumption, one for smartphone/tablet use), as well as corresponding addiction scales and health outcomes (study 1), or established validity measures (study 2), were assessed. Both SRHI scales showed satisfying item characteristics, high internal consistencies (αs > .90), adequate construct validity, and a three-factorial solution with a satisfying model fit (CFI/TLIs > .95, SRMRs ≤ 0.05). Highest correlations emerged between SRHI and addiction scales. The studies show that the German SRHI can be used to validly assess health-risk behaviors. The observed strong correlations of the SRHI scales with addiction scales suggest that (self-reported) habit is indeed an important aspect to consider in addiction research.
The introduction of the ICF model as a basis for rehabilitation provides new perspectives on rehabilitation practices. According to the ICF, participation can be enhanced via different pathways, including interventions on environmental factors.
We have conducted a document analysis, linking to the ICF environmental factor codes, expert workshops and focus groups.
The project resulted in a substantial number of different recommendations.
Background: Electronic medical records (EMRs) offer a promising approach to mapping and documenting the complex information gathered in paediatric palliative care (PPC). However, if they are not well developed, poorly implemented EMRs have unintended consequences that may cause harm to patients. One approach to preventing such harm is the involvement of users in the participatory design to ensure user acceptance and patient safety. Therefore, the aim of this study is to evaluate the acceptance of a novel patient chart module (PCM) as part of an EMR from the perspective of potential users in PPC and to involve these professionals in the design process. Methods: A qualitative observational study with N = 16 PPC professionals (n = 10 nurses, n = 6 physicians) was conducted, including concurrent think aloud (CTA) and semi-structured interviews. A structured content analysis based on the Unified Theory of Acceptance and Use of Technology was applied. Results: The results can be summarized in terms of general observations, performance expectancy, effort expectancy and facilitating conditions, all of which are likely to have a positive influence on acceptance of the PCM from the user perspective in the context of PPC. Conclusions: The involvement of users in the development of EMRs is important for meeting the requirements in PPC. Further software adaptations are necessary to implement these requirements.
Background: Pediatric palliative care (PPC) patients experience years of multisectoral and professional care. An electronic cross-facility health record (ECHR) system can support the immediate exchange of information among PPC professionals. Based on a needs assessment, a prototype ECHR system was developed. Methods: To evaluate potential users’ perspective regarding the system, a qualitative observational study was conducted consisting of a concurrent think-aloud session and a semi-structured qualitative interview. Results: Twenty PPC professionals (nurses, physicians) from specialized outpatient PPC teams, a PPC unit, and medical offices rated the ECHR system as a helpful tool to improve the exchange and collection of information, communication between PPC professionals, and treatment planning. From the user’s point of view, the basic logic of the ECHR system should be further adapted to improve the interaction of data remirrored from patient records of outpatient and inpatient care with those entered via the system. The users wished for further functions (text search) and content (information on therapies). Some content, such as the treatment process, needs to be further adapted. Conclusion: The developed ECHR system needs to be more specific in some features by offering all available information; while for other features, be less specific to offer a quick overview. The ability to share information promptly and automatically was seen as a tremendous improvement to the quality of care for PPC patients.
This paper describes the data mining method of association analysis within the framework of Knowledge Discovery in Databases (KDD) with the aim to identify standard patterns of nursing care. The approach is application-oriented and used on nursing routine data of the method LEP nursing 2. The increasing use of information technology in hospitals, especially of nursing information systems, requires the storage of large data sets, which hitherto have not always been analyzed adequately. Three association analyses for the days of admission, surgery and discharge, have been performed. The results of almost 1.5 million generated association rules indicate that it is valid to apply association analysis to nursing routine data. All rules are semantically trivial, since they reflect existing knowledge from the domain of nursing. This may be due either to the method LEP Nursing 2, or to the nursing activities themselves. Nonetheless, association analysis may in future become a useful analytical tool on the basis of structured nursing routine data.
Hospital information systems (HIS) should give support to nurses in their clinical and managerial duties. Though there are statistical data on the current use of HIS systems we know only little about the numbers of nursing modules implemented. We therefore conducted a nationwide survey in Germany (n = 2182) on the current state and future plans of HIS modules including nursing applications (response rate of 27.6 %). The findings show that management applications (84 % accounting) are still more frequent than clinical applications, in particular clinical patient record systems (19 %). What applied for HIS modules in general held also true for nursing on a lower level. ‘Whereas 51 %of the hospitals had rostering systems in place only 6 % used care planning software. Priorities and plans for the future reveal no change in the rank órder of systems. We argue that in order for clinical documentation and planning systems to catch up they must be immediately rewarding for the clinicians in their daily need for information.
Background: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. Methods: Guided by design thinking, first, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Based on the needs stated in the interviews, prototypes of the ECHR were developed and discussed in the FGs. The indicated needs were supplemented and specified in an iterative process. The prototypes were further adapted according to these results. The unified theory of acceptance and use of technology was the basic model in the evaluation of needs. Results: Across seven main categories, past and current medication, emergency view, and messaging functions were identified as the participants’ desired core components of an ECHR. Utilizing design thinking facilitated the explicit articulation of user needs. Conclusions: Developing an ECHR with the content identified would allow for real-time data during emergencies, tracking what other PPC professionals have done, and making the applied treatments visible to others. This would offer a broader picture of the complex conditions common to PPC.
IntroductionAssessment of challenging behaviors in dementia is important for intervention selection. Here, we describe the technical and experimental setup and the feasibility of long-term multidimensional behavior assessment of people with dementia living in nursing homes.MethodsWe conducted 4 weeks of multimodal sensor assessment together with real-time observation of 17 residents with moderate to very severe dementia in two nursing care units. Nursing staff received extensive training on device handling and measurement procedures. Behavior of a subsample of eight participants was further recorded by videotaping during 4 weeks during day hours. Sensors were mounted on the participants' wrist and ankle and measured motion, rotation, as well as surrounding loudness level, light level, and air pressure.ResultsParticipants were in moderate to severe stages of dementia. Almost 100% of participants exhibited relevant levels of challenging behaviors. Automated quality control detected 155 potential issues. But only 11% of the recordings have been influenced by noncompliance of the participants. Qualitative debriefing of staff members suggested that implementation of the technology and observation platform in the routine procedures of the nursing home units was feasible and identified a range of user- and hardware-related implementation and handling challenges.DiscussionOur results indicate that high-quality behavior data from real-world environments can be made available for the development of intelligent assistive systems and that the problem of noncompliance seems to be manageable. Currently, we train machine-learning algorithms to detect episodes of challenging behaviors in the recorded sensor data.