@article{BusseJuxKernebecketal.2021, author = {Busse, Theresa Sophie and Jux, Chantal and Kernebeck, Sven and Dreier, Larissa Alice and Meyer, Dorothee and Zenz, Daniel and Zernikow, Boris and Ehlers, Jan Peter}, title = {Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach}, series = {Children}, volume = {8}, journal = {Children}, issn = {2227-9067}, doi = {10.25974/fhms-17324}, url = {http://nbn-resolving.de/urn:nbn:de:hbz:836-opus-173245}, pages = {602}, year = {2021}, abstract = {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.}, language = {en} } @article{KernebeckKramerRedaellietal.2021, author = {Kernebeck, Sven and Kramer, Ursula and Redaelli, Marcus and Vollmar, Horst Christian}, title = {Bewerten, aber wie? - Kriterien f{\"u}r die Evaluation und das Reporting von Studien zu Gesundheits- und Medizin-Apps}, series = {Monitor Versorgungsforschung}, volume = {14}, journal = {Monitor Versorgungsforschung}, number = {2}, doi = {10.25974/fhms-17325}, url = {http://nbn-resolving.de/urn:nbn:de:hbz:836-opus-173256}, year = {2021}, language = {en} } @article{MeyerKernebeckBusseetal.2021, author = {Meyer, Dorothee and Kernebeck, Sven and Busse, Theresa Sophie and Ehlers, Jan and Wager, Julia and Zernikow, Boris and Dreier, Larissa Alice}, title = {Electronic Health Records in Specialized Pediatric Palliative Care: A Qualitative Needs Assessment among Professionals Experienced and Inexperienced in Electronic Documentation}, series = {Children}, volume = {8}, journal = {Children}, issn = {2227-9067}, doi = {10.25974/fhms-17326}, url = {http://nbn-resolving.de/urn:nbn:de:hbz:836-opus-173265}, pages = {249}, year = {2021}, abstract = {Background: Currently, to the best of our knowledge, no findings exist concerning the needs of professionals in specialized pediatric palliative care (PPC) regarding electronic health records (EHRs). Several studies have highlighted benefits concerning the use of EHRs in pediatrics. However, usability is strongly affected by the degree of adaptivity to the context of application. The aim of this study is to examine the needs of professionals concerning an EHR in the specialized PPC inpatient and outpatient settings. Methods: A qualitative research design was chosen to address the complex aspects of user demands. Focus group interviews and semi-structured one-on-one interviews were conducted with PPC professionals. N = 23 participants from inpatient and N = 11 participants from outpatient settings of specialized PPC representing various professions took part in the study. Results: The findings could be grouped into four categories: (1) attitude towards the current methods of documentation, (2) attitude towards electronic documentation in general, (3) general requirements for an EHR, and (4) content requirements for an EHR. Conclusions: Professionals in specialized PPC expect and experience many benefits of using electronic documentation. Their requirements for an EHR for inpatient and outpatient settings of PPC are largely consistent with EHRs for pediatrics. However, individual specifications and adaptations are necessary for this particular setting.}, language = {en} } @article{RistauOettingRossBuescher2020, author = {Ristau, Patrick and Oetting-Roß, Claudia and B{\"u}scher, Andreas}, title = {Mapping the knowledge on coping processes in patients with pancreatic cancer: a scoping review protocol.}, series = {Social Science Protocols}, volume = {3}, journal = {Social Science Protocols}, number = {1}, publisher = {Edinburgh Diamond}, doi = {10.25974/fhms-17011}, url = {http://nbn-resolving.de/urn:nbn:de:hbz:836-opus-170113}, pages = {1 -- 15}, year = {2020}, language = {en} } @article{KernebeckHollePogschebaetal.2019, author = {Kernebeck, Sven and Holle, Daniela and Pogscheba, Patrick and Jordan, Felix and Mertl, Fabian and Huldtgren, Alina and Bader, Sebastian and Kirste, Thomas and Teipel, Stefan and Holle, Bernhard and Halek, Margareta}, title = {A Tablet App- and Sensor-Based Assistive Technology Intervention for Informal Caregivers to Manage the Challenging Behavior of People With Dementia (the insideDEM Study): Protocol for a Feasibility Study (Preprint)}, series = {JMIR Res Protoc}, volume = {8}, journal = {JMIR Res Protoc}, number = {2}, doi = {10.25974/fhms-17306}, url = {http://nbn-resolving.de/urn:nbn:de:hbz:836-opus-173061}, year = {2019}, abstract = {BACKGROUND Despite the enormous number of assistive technologies (ATs) in dementia care, the management of challenging behavior (CB) of persons with dementia (PwD) by informal caregivers in home care is widely disregarded. The first-line strategy to manage CB is to support the understanding of the underlying causes of CB to formulate individualized nonpharmacological interventions. App- and sensor-based approaches combining multimodal sensors (actimetry and other modalities) and caregiver information are innovative ways to support the understanding of CB for family caregivers. OBJECTIVE The main aim of this study is to describe the design of a feasibility study consisting of an outcome and a process evaluation of a newly developed app- and sensor-based intervention to manage CB of PwD for family caregivers at home. METHODS In this feasibility study, we perform an outcome and a process evaluation with a pre-post descriptive design over an 8-week intervention period. The Medical Research Council framework guides the design of this feasibility study. The data on 20 dyads (primary caregiver and PwD) are gathered through standardized questionnaires, protocols, and log files as well as semistructured qualitative interviews. The outcome measures (neuropsychiatric inventory and Cohen-Mansfield agitation inventory) are analyzed by using descriptive statistics and statistical tests relevant to the individual assessments (eg, chi-square test and Wilcoxon signed-rank test). For the analysis of the process data, the Unified Theory of Acceptance and Use of Technology is used. Log files are analyzed by using descriptive statistics, protocols are analyzed by using documentary analysis, and semistructured interviews are analyzed deductively using content analysis. RESULTS The newly developed app- and sensor-based AT has been developed and was evaluated until July in 2018. The recruitment of dyads started in September 2017 and was concluded in March 2018. The data collection was completed at the end of July 2018. CONCLUSIONS This study presents the protocol of the first feasibility study to encompass an outcome and process evaluation to assess a complex app- and sensor-based AT combining multimodal actimetry sensors for informal caregivers to manage CB. The feasibility study will provide in-depth information about the study procedure and on how to optimize the design of the intervention and its delivery. INTERNATIONAL REGISTERED REPOR DERR1-10.2196/11630}, language = {de} } @article{KernebeckHollePogschebaetal.2019, author = {Kernebeck, Sven and Holle, Daniela and Pogscheba, Patrick and Jordan, Felix and Mertl, Fabian and Huldtgren, Alina and Bader, Sebastian and Kirste, Thomas and Teipel, Stefan and Holle, Bernhard and Halek, Margareta}, title = {A Tablet App- and Sensor-Based Assistive Technology Intervention for Informal Caregivers to Manage the Challenging Behavior of People With Dementia (the insideDEM Study): Protocol for a Feasibility Study}, series = {JMIR Research Protocols}, volume = {8}, journal = {JMIR Research Protocols}, issn = {1929-0748}, doi = {10.25974/fhms-17327}, url = {http://nbn-resolving.de/urn:nbn:de:hbz:836-opus-173274}, pages = {e11630}, year = {2019}, abstract = {Despite the enormous number of assistive technologies (ATs) in dementia care, the management of challenging behavior (CB) of persons with dementia (PwD) by informal caregivers in home care is widely disregarded. The first-line strategy to manage CB is to support the understanding of the underlying causes of CB to formulate individualized nonpharmacological interventions. App- and sensor-based approaches combining multimodal sensors (actimetry and other modalities) and caregiver information are innovative ways to support the understanding of CB for family caregivers. The main aim of this study is to describe the design of a feasibility study consisting of an outcome and a process evaluation of a newly developed app- and sensor-based intervention to manage CB of PwD for family caregivers at home. In this feasibility study, we perform an outcome and a process evaluation with a pre-post descriptive design over an 8-week intervention period. The Medical Research Council framework guides the design of this feasibility study. The data on 20 dyads (primary caregiver and PwD) are gathered through standardized questionnaires, protocols, and log files as well as semistructured qualitative interviews. The outcome measures (neuropsychiatric inventory and Cohen-Mansfield agitation inventory) are analyzed by using descriptive statistics and statistical tests relevant to the individual assessments (eg, chi-square test and Wilcoxon signed-rank test). For the analysis of the process data, the Unified Theory of Acceptance and Use of Technology is used. Log files are analyzed by using descriptive statistics, protocols are analyzed by using documentary analysis, and semistructured interviews are analyzed deductively using content analysis. The newly developed app- and sensor-based AT has been developed and was evaluated until July in 2018. The recruitment of dyads started in September 2017 and was concluded in March 2018. The data collection was completed at the end of July 2018. This study presents the protocol of the first feasibility study to encompass an outcome and process evaluation to assess a complex app- and sensor-based AT combining multimodal actimetry sensors for informal caregivers to manage CB. The feasibility study will provide in-depth information about the study procedure and on how to optimize the design of the intervention and its delivery. DERR1-10.2196/11630}, language = {en} } @article{TeipelHeineHeinetal.2017, author = {Teipel, Stefan and Heine, Christina and Hein, Albert and Kr{\"u}ger, Frank and Kutschke, Andreas and Kernebeck, Sven and Halek, Margareta and Bader, Sebastian and Kirste, Thomas}, title = {Multidimensional assessment of challenging behaviors in advanced stages of dementia in nursing homes—The insideDEM framework}, series = {Alzheimer's \& Dementia: Diagnosis, Assessment \& Disease Monitoring}, volume = {8}, journal = {Alzheimer's \& Dementia: Diagnosis, Assessment \& Disease Monitoring}, issn = {2352-8729}, doi = {10.25974/fhms-17330}, url = {http://nbn-resolving.de/urn:nbn:de:hbz:836-opus-173308}, pages = {36 -- 44}, year = {2017}, abstract = {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.}, language = {en} }