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Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt

Australia is a multicultural nation with a large migrant population. Migrants with cancer report inferior quality of life and the need for more information in their own language. This paper describes lessons learnt from developing culturally appropriate written information resources with and for Ara...

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Autores principales: Wiley, Georgina, Piper, Amanda, Phyllis Butow, AM, Schofield, Penny, Douglas, Fiona, Roy, Jane, Nolte, Linda, Jefford, Michael
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Medknow Publications & Media Pvt Ltd 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763430/
https://www.ncbi.nlm.nih.gov/pubmed/29379844
http://dx.doi.org/10.4103/apjon.apjon_63_17
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author Wiley, Georgina
Piper, Amanda
Phyllis Butow, AM
Schofield, Penny
Douglas, Fiona
Roy, Jane
Nolte, Linda
Jefford, Michael
author_facet Wiley, Georgina
Piper, Amanda
Phyllis Butow, AM
Schofield, Penny
Douglas, Fiona
Roy, Jane
Nolte, Linda
Jefford, Michael
author_sort Wiley, Georgina
collection PubMed
description Australia is a multicultural nation with a large migrant population. Migrants with cancer report inferior quality of life and the need for more information in their own language. This paper describes lessons learnt from developing culturally appropriate written information resources with and for Arabic, Italian, and Vietnamese cancer survivors and carers. The information needs of survivors from these language groups as well as guidelines for the development of written resources for culturally diverse populations were identified through literature review. Community consultation was undertaken with focus groups. The content was developed and tested with health professionals who spoke the appropriate language and focus group participants, ensuring relevance and appropriateness. Resource design and dissemination were informed through community consultation. A number of key tasks for developing resources were identified as follows: (1) community engagement and consultation; (2) culturally sensitive data collection; (3) focus group facilitators (recruitment and training); (4) content development; (5) translation and review process; (6) design; and (7) sustainability. This project reinforced literature review findings on the importance of cultural sensitivity in the development of resources. Engaging with community groups and incorporating culturally appropriate recruitment strategies optimises recruitment to focus groups and facilitates content development. Stakeholders and lay persons from the intended ethnic-minority communities should be involved in the development and formative evaluation of resources to ensure appropriateness and relevance and in the dissemination strategy to optimize penetration. We believe the lessons we have learnt will be relevant to any group intending to develop health information for culturally and linguistic diverse groups.
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spelling pubmed-57634302018-01-29 Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt Wiley, Georgina Piper, Amanda Phyllis Butow, AM Schofield, Penny Douglas, Fiona Roy, Jane Nolte, Linda Jefford, Michael Asia Pac J Oncol Nurs Short Report Australia is a multicultural nation with a large migrant population. Migrants with cancer report inferior quality of life and the need for more information in their own language. This paper describes lessons learnt from developing culturally appropriate written information resources with and for Arabic, Italian, and Vietnamese cancer survivors and carers. The information needs of survivors from these language groups as well as guidelines for the development of written resources for culturally diverse populations were identified through literature review. Community consultation was undertaken with focus groups. The content was developed and tested with health professionals who spoke the appropriate language and focus group participants, ensuring relevance and appropriateness. Resource design and dissemination were informed through community consultation. A number of key tasks for developing resources were identified as follows: (1) community engagement and consultation; (2) culturally sensitive data collection; (3) focus group facilitators (recruitment and training); (4) content development; (5) translation and review process; (6) design; and (7) sustainability. This project reinforced literature review findings on the importance of cultural sensitivity in the development of resources. Engaging with community groups and incorporating culturally appropriate recruitment strategies optimises recruitment to focus groups and facilitates content development. Stakeholders and lay persons from the intended ethnic-minority communities should be involved in the development and formative evaluation of resources to ensure appropriateness and relevance and in the dissemination strategy to optimize penetration. We believe the lessons we have learnt will be relevant to any group intending to develop health information for culturally and linguistic diverse groups. Medknow Publications & Media Pvt Ltd 2018 /pmc/articles/PMC5763430/ /pubmed/29379844 http://dx.doi.org/10.4103/apjon.apjon_63_17 Text en Copyright: © 2017 Ann & Joshua Medical Publishing Co. Ltd http://creativecommons.org/licenses/by-nc-sa/3.0 This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike 3.0 License, which allows others to remix, tweak, and build upon the work non-commercially, as long as the author is credited and the new creations are licensed under the identical terms.
spellingShingle Short Report
Wiley, Georgina
Piper, Amanda
Phyllis Butow, AM
Schofield, Penny
Douglas, Fiona
Roy, Jane
Nolte, Linda
Jefford, Michael
Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt
title Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt
title_full Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt
title_fullStr Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt
title_full_unstemmed Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt
title_short Developing Written Information for Cancer Survivors from Culturally and Linguistically Diverse Backgrounds: Lessons Learnt
title_sort developing written information for cancer survivors from culturally and linguistically diverse backgrounds: lessons learnt
topic Short Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763430/
https://www.ncbi.nlm.nih.gov/pubmed/29379844
http://dx.doi.org/10.4103/apjon.apjon_63_17
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