Study protocol OKRA: orientation compass for the preparing, delivering and following up on breaking bad news conversations in paediatric oncology

被引:0
|
作者
Krieger, Theresia [1 ,2 ,3 ,4 ]
Dittmer, Kerstin [2 ,4 ,5 ]
Reinert, David [2 ,4 ,5 ]
Hoemberg, Marc [6 ]
Tepe, Andrea [7 ]
Hamm, Isabel [8 ,9 ]
Vitinius, Frank [8 ,9 ,10 ]
机构
[1] Univ Cologne, Med Psychol Neuropsychol & Gender Studies, Cologne, Germany
[2] Univ Cologne, Ctr Neuropsychol Diagnost & Intervent CeNDI, Cologne, Germany
[3] Univ Hosp Cologne, Fac Med, Cologne, Germany
[4] Univ Hosp Cologne, Cologne, Germany
[5] Univ Cologne, Fac Med, Dept Med Psychol Neuropsychol & Gender Studies, Cologne, Germany
[6] Univ Cologne, Childrens Hosp, Dept Paediat Oncol Haematol, Cologne, Germany
[7] Fdn Children Canc Affiliated Parent House, Cologne, Germany
[8] Univ Cologne, Dept Psychosomat & Psychotherapy, Cologne, Germany
[9] Fac Med, Cologne, Germany
[10] Robert Bosch Krankenhaus, Dept Psychosomat Med, Stuttgart, Germany
关键词
Adolescent Health; Caregivers; Health services research; Qualitative research; COMMUNICATION-SKILLS; EXPERIENCES; DESIGN;
D O I
10.1136/bmjpo-2023-002473
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
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.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 & Uuml;bermittlung 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.
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页数:7
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