Kinder und Jugendliche mit lebensverkürzenden Erkrankungen in der palliativen Versorgung

Janßen, Gisela; Kuhlen, Michaela

doi:10.1007/978-3-642-38690-9_17

Cited by 4 publications

(3 citation statements)

References 4 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Pediatric palliative care (PPC) follows a holistic approach to care for children, young adults, and adolescents with life-limiting or life-shortening illnesses [ 1 ]. Care is provided for many years [ 2 ] and in sequences of treatment episodes from various inpatient and outpatient providers, such as pediatricians and general practitioners from medical offices (MO) and general outpatient PPC teams at home [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR)

Busse

Kernebeck

Dreier

et al. 2022

IJERPH

View full text Add to dashboard Cite

Pediatric palliative care (PPC) patients require years of care across professions and sectors. Sharing treatment-related information and communicating among different PPC professionals is critical to ensure good quality of care. In Germany, this communication is mostly paper-based and prone to errors. Therefore, an electronic cross-facility health record (ECHR) was participatorily designed with users, wherein information can be shared and PPC professionals can communicate with each other. As this form of electronic health record differs from existing models in Germany, there is a need for successful implementation to ensure a positive impact. Therefore, the facilitators and barriers to the implementation of ECHR in PPC were examined. Using the consolidated framework for implementation research (CFIR), transcripts of 32 interviews, 3 focus groups, and 20 think-aloud studies with PPC professionals were analyzed. CFIR indicated that the ECHR-design was viewed positively by users and can be a facilitator for implementation. Barriers exist, mainly due to the fact that the implementation is not planned, the use of the ECHR involves effort, costs are not covered, and all users must be motivated to use the ECHR for functionality. CFIR helps uncover the crux of the issues that need to be considered when planning ECHR implementation to improve care in PPC.

show abstract

Section: Introductionmentioning

confidence: 99%

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR)

Busse

Kernebeck

Dreier

et al. 2022

IJERPH

View full text Add to dashboard Cite

show abstract

“…Pediatric palliative care (PPC) represents a holistic patient and family centered care approach for neonates, children, adolescents, and young adults with life-limiting or lifethreatening illnesses-that is preferably provided by a multi-professional team (e.g., physicians, nurses, psychosocial staff, and therapists) [1,2]. PPC patients' diseases are often rare and characterized by a high variance of symptomatology [3][4][5].…”

Section: Introductionmentioning

confidence: 99%

Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach

et al. 2021

View full text Add to dashboard Cite

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.

show abstract

“…Pediatric palliative care (PPC) represents a holistic care approach for children, adolescents, and young adults with life-limiting or life-shortening illnesses [1]. These mainly include neurologic, genetic/congenital, and neuromuscular, but also metabolic conditions.…”

Section: Introductionmentioning

confidence: 99%

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study

et al. 2021

View full text Add to dashboard Cite

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.

show abstract

Kinder und Jugendliche mit lebensverkürzenden Erkrankungen in der palliativen Versorgung

Cited by 4 publications

References 4 publications

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR)

Planning for Implementation Success of an Electronic Cross-Facility Health Record for Pediatric Palliative Care Using the Consolidated Framework for Implementation Research (CFIR)

Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach

Participatory Design of an Electronic Cross-Facility Health Record (ECHR) System for Pediatric Palliative Care: A Think-Aloud Study

Contact Info

Product

Resources

About