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1.
BMJ Paediatr Open ; 8(1)2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38823801

RESUMO

INTRODUCTION: In paediatric oncology, 'breaking bad news'-BBN-like cancer diagnosis is perceived as particularly challenging. Enabling a trialogue between children with their relatives and health professionals requires profound communication skills. Lacking the skills, experience or adequate support tools might result in negative consequences for both paediatric oncologists as BBN transmitters and BBN receivers as children with cancer and their relatives.In contrast to oncology for adults, multiperspective studies that explore BBN experience and specific support needs are rare, especially in Germany. Systematically developed and practically piloted support instruments, which address the specific needs of paediatric oncology, are missing. OBJECTIVE: To systematically design and mature in practice an orientation compass for preparing, delivering and following up on BBN conversations in paediatric oncology-so-called Orientierungskompass zur Übermittlung schwerwiegender Nachrichten in der Kinderonkologie (OKRA). METHODS AND ANALYSIS: OKRA is based on a QUAL-quant mixed study design, comprising two phases. Four groups will contribute (1) experts through personal experience (representatives for children receiving BBN and their parents), (2) medical care providers and representatives of national medical societies, (3) ambulant psychosocial/psychological support providers and (4) researchers. In phase 1, multiperspective knowledge is generated through a participatory group Delphi that involves in-depth interviews, focus group discussions and questionnaires. This process culminates in formulating theses for a high-quality BBN process (output phase 1). In phase 2, based on the theses, a pilot orientation compass is designed. Through iterative cycles with the participatory action research method, this instrument will be piloted in three paediatric oncological settings and consequently optimised. ETHICS AND DISSEMINATION: OKRA was approved on 19 September 2023 by the ethics committee of the Medical Faculty of the University of Cologne (No. 23-1187). After project completion, the OKRA compass will be distributed to multidisciplinary paediatric oncology teams throughout Germany. TRIAL REGISTRATION NUMBER: DRKS00031691.


Assuntos
Revelação da Verdade , Humanos , Criança , Alemanha , Neoplasias/terapia , Neoplasias/psicologia , Oncologia/métodos , Pediatria/métodos , Comunicação , Relações Médico-Paciente , Pais/psicologia , Relações Profissional-Família
2.
Stud Health Technol Inform ; 281: 1015-1016, 2021 May 27.
Artigo em Inglês | MEDLINE | ID: mdl-34042828

RESUMO

This short paper aims to raise awareness of good usability design in medical computer sciences. We present a research plan about developing usability design guidelines for web application development in medical informatics. Following a nimble creation process we shall create a guideline tailored for software developers, that aims to improve communication between the developer and the medical professional. Results are therefore expected to impact the way applications are being developed within the medical sector.


Assuntos
Informática Médica , Estudos Prospectivos , Projetos de Pesquisa , Software , Interface Usuário-Computador
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