Cargando…
Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health
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 challe...
Autores principales: | , , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
JMIR Publications
2020
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7267985/ https://www.ncbi.nlm.nih.gov/pubmed/32427112 http://dx.doi.org/10.2196/16493 |
_version_ | 1783541519685255168 |
---|---|
author | Berbyuk Lindström, Nataliya Woldemariam, Aynalem Abraha Bekele, Abebe Munthe, Christian Andersson, Rune Girma Kebede, Bethlehem Linderholm, Barbro Tigeneh, Wondemagegnhu |
author_facet | Berbyuk Lindström, Nataliya Woldemariam, Aynalem Abraha Bekele, Abebe Munthe, Christian Andersson, Rune Girma Kebede, Bethlehem Linderholm, Barbro Tigeneh, Wondemagegnhu |
author_sort | Berbyuk Lindström, Nataliya |
collection | PubMed |
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 |
format | Online Article Text |
id | pubmed-7267985 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | JMIR Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-72679852020-06-05 Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health Berbyuk Lindström, Nataliya Woldemariam, Aynalem Abraha Bekele, Abebe Munthe, Christian Andersson, Rune Girma Kebede, Bethlehem Linderholm, Barbro Tigeneh, Wondemagegnhu JMIR Res Protoc Proposal 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 JMIR Publications 2020-05-19 /pmc/articles/PMC7267985/ /pubmed/32427112 http://dx.doi.org/10.2196/16493 Text en ©Nataliya Berbyuk Lindström, Aynalem Abraha Woldemariam, Abebe Bekele, Christian Munthe, Rune Andersson, Bethlehem Girma Kebede, Barbro Linderholm, Wondemagegnhu Tigeneh. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 19.05.2020. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org, as well as this copyright and license information must be included. |
spellingShingle | Proposal Berbyuk Lindström, Nataliya Woldemariam, Aynalem Abraha Bekele, Abebe Munthe, Christian Andersson, Rune Girma Kebede, Bethlehem Linderholm, Barbro Tigeneh, Wondemagegnhu Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health |
title | Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health |
title_full | Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health |
title_fullStr | Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health |
title_full_unstemmed | Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health |
title_short | Person and Family Centeredness in Ethiopian Cancer Care: Proposal for a Project for Improving Communication, Ethics, Decision Making, and Health |
title_sort | person and family centeredness in ethiopian cancer care: proposal for a project for improving communication, ethics, decision making, and health |
topic | Proposal |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7267985/ https://www.ncbi.nlm.nih.gov/pubmed/32427112 http://dx.doi.org/10.2196/16493 |
work_keys_str_mv | AT berbyuklindstromnataliya personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth AT woldemariamaynalemabraha personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth AT bekeleabebe personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth AT munthechristian personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth AT anderssonrune personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth AT girmakebedebethlehem personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth AT linderholmbarbro personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth AT tigenehwondemagegnhu personandfamilycenterednessinethiopiancancercareproposalforaprojectforimprovingcommunicationethicsdecisionmakingandhealth |