Dataset Information

Improving Communication in Adolescent Cancer Care: A Multiperspective Study.

ABSTRACT: Professionals treating adolescents with cancer must communicate well with them and their parents. Evidence suggests that the communication needs of this population are rarely met. Skills training can improve professional communication, but has been criticized for not being based on the experience of the participants in the clinical encounter. We took a multiperspective approach, drawing on perspectives of former adolescents with cancer, patients' parents, physicians, and nurses with the aim to provide suggestions for improvement in communication in adolescent cancer care.Adolescent cancer survivors (n = 16), parents (n = 8), pediatric oncologists (n = 12), and pediatric oncology nurses (n = 18) participated in 11 focus groups. They discussed their experiences communicating with each other. Transcripts were analyzed by thematic analysis.We identified themes within the following sections: (1) The framework in which professionals communicate with adolescents with cancer (regression in a time of detachment, adolescents' perception and knowledge of illness, cognitive versus legal maturity, "lost in transition" between pediatric and adult oncology); (2) communication difficulties between professionals and patients and parents (professionals and patients/parents identified the other party as the source of difficulties), and (3) effective professional communication (there was some overlap on how doctors and nurses should communicate, along with substantially different expectations for the two professions).The framework within which professionals communicate, the different perspectives on the factors that make communication difficult, and the different expectations regarding good communication by doctors and nurses should be considered when communication skills training courses are developed for professionals who work in adolescent oncology.

SUBMITTER: Essig S

PROVIDER: S-EPMC5917069 | biostudies-literature | 2016 Aug

REPOSITORIES: biostudies-literature

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Improving Communication in Adolescent Cancer Care: A Multiperspective Study.

Essig Stefan S Steiner Claudia C Kuehni Claudia E CE Weber Heidemarie H Kiss Alexander A

Pediatric blood & cancer 20160415 8

<h4>Background</h4>Professionals treating adolescents with cancer must communicate well with them and their parents. Evidence suggests that the communication needs of this population are rarely met. Skills training can improve professional communication, but has been criticized for not being based on the experience of the participants in the clinical encounter. We took a multiperspective approach, drawing on perspectives of former adolescents with cancer, patients' parents, physicians, and nurse ...[more]

PMID: 27081706

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Project description:BACKGROUND:Cancer is a major burden in Ethiopia. The Oncology Department of Tikur Anbessa (Black Lion) Specialized Hospital in Addis Ababa is the sole specialist unit for cancer care in the country. With only a handful of oncologists, a lack of resources, and a huge patient load, the work is challenging, especially in terms of achieving effective and ethical patient consultations. Patients, usually accompanied by family members, often wait for a long time to receive medical attention and frequently depart without treatment. Handling consultations effectively is essential to help patients as much as possible within such limitations. OBJECTIVE:The project has the following three main aims: (1) to enhance and expand the understanding of communicative and associated ethical challenges in Ethiopian cancer care; (2) to enhance and expand the understanding of the implications and use of person- and family-centered solutions to address such communicative challenges in practice; and (3) to plan and evaluate interventions in this area. METHODS:This project develops and consolidates a research collaboration to better understand and mitigate the communicative challenges in Ethiopian cancer care, with a focus on the handling and sharing of decision making and ethical tension among patients, staff, and family. Using theoretical models from linguistics, health communication, and health care ethics, multiple sources of data will be analyzed. Data sources currently include semistructured interviews with Ethiopian staff (n= 16), patients (n= 54), and family caregivers (n= 22); survey data on cancer awareness (n=150) and attitudes toward breaking bad news (n=450); and video recordings of medical consultations (n=45). In addition, we will develop clinical and methodological solutions to formulate educational interventions. RESULTS:The project was awarded funding by the Swedish Research Council in December 2017 for the period 2018 to 2021. The research ethics boards in Sweden and Ethiopia approved the project in May 2018. The results of the studies will be published in 2020 and 2021. CONCLUSIONS:The project is the first step toward providing unique and seminal knowledge for the specific context of Ethiopia in the areas of physician-patient communication research and ethics. It contributes to the understanding of the complexity of the role of family and ethical challenges in relation to patient involvement and decision making in Ethiopia. Improved knowledge in this area can provide a fundamental model for ways to improve cancer care in many other low-resource settings in Africa and the Middle East, which share central cultural prerequisites, such as a strong patriarchal family structure, along with strong and devout religiosity. The project will also serve to develop greater understanding about the current challenges in Western health systems associated with greater family and patient participation in decision making. In addition, the project will contribute to improving the education of Ethiopian health professionals working in cancer care by developing a training program to help them better understand and respond to identified challenges associated with communication. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):DERR1-10.2196/16493.

Project description:Background: New cross-sectoral mental health care models have been initiated in Germany to overcome the fragmentation of the German health care system. Starting in 2013, flexible and integrative psychiatric care model projects according to §64b SGB V German Social Law (FIT64b) have been implemented. The study "PsychCare" combines quantitative and qualitative primary data with routine health insurance data for the evaluation of these models. Effects, costs and cost-effectiveness from the perspectives of patients, relatives and care providers are compared with standard care. Additionally, quality indicators for a modern, flexible and integrated care are developed. This article describes the rationale, design and methods of the project. Methods: "PsychCare" is built on a multiperspective and multimethod design. A controlled prospective multicenter cohort study is conducted with three data collection points (baseline assessment, follow-up after 9 and 15 months). A total of 18 hospitals (10 FIT64b model and 8 matched control hospitals) have consecutively recruited in- and outpatients with pre-specified common and/or severe psychiatric disorders. Primary endpoints are differences in change of health-related quality of life and treatment satisfaction. Sociodemographic and service receipt data of the primary data collection are linked with routine health insurance data. A cost-effectiveness analysis, a mixed method, participatory process evaluation by means of qualitative surveys and the development of quality indicators are further elements of "PsychCare." Discussion and Practical Implications: The results based on data from different methodological approaches will provide essential conclusions for the improvement of hospital based mental health care in Germany. This should result in the identification of key FIT64b elements that can be efficiently implemented into standard care in Germany and re-structure the care strongly aligned to patient needs. Clinical Trial Registration: German Clinical Trial Register, identifier DRKS 00022535.

Dataset Information

Improving Communication in Adolescent Cancer Care: A Multiperspective Study.

Publications

Improving Communication in Adolescent Cancer Care: A Multiperspective Study.

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