Staying moving, staying strong: Protocol for developing culturally appropriate information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout
Addressing disparities in arthritis care is an important yet unmet health need for Aboriginal and Torres Strait Islander people in Australia (respectfully Aboriginal people herewith). Despite the significant prevalence and burden of arthritis within Aboriginal communities, access to care for arthrit...
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| Veröffentlicht in: | PloS one 2021-12, Vol.16 (12), p.e0261670 |
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| description | Addressing disparities in arthritis care is an important yet unmet health need for Aboriginal and Torres Strait Islander people in Australia (respectfully Aboriginal people herewith). Despite the significant prevalence and burden of arthritis within Aboriginal communities, access to care for arthritis is low. One means to reduce existing disparities in health care is to address current challenges relating to the appropriateness and acceptability of health care information resources for Aboriginal people. Health information sources can help to empower patients and their families to have greater involvement in their care and to engage in self-management of their condition. Despite an extensive range of arthritis information resources being available, currently no resources have been culturally adapted and developed in collaboration with Aboriginal consumers with arthritis. This paper outlines the processes that will be undertaken within the Staying Moving, Staying Strong project. This project aims to develop culturally secure arthritis information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout.
The overarching principle guiding this project is cultural security, referring to the incorporation of processes such that the research will not compromise the cultural rights, values and expectations of Aboriginal people. This project will prioritise partnerships, community engagement, community benefit, sustainability, transferability, and capacity building and therefore uphold the cultural rights and values of Aboriginal people. In this six-phase project we will; 1) Establish a community reference group and advisory committee; 2) Explore the health information needs and preferences of Aboriginal people with arthritis; 3) Synthesise the existing key recommendations in high quality clinical practice guidelines on arthritis care; 4) Culturally adapt key clinical recommendations; 5) Develop culturally appropriate arthritis resources and; 6) Qualitatively evaluate the developed resources. |
| doi_str_mv | 10.1371/journal.pone.0261670 |
| format | Article |
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The overarching principle guiding this project is cultural security, referring to the incorporation of processes such that the research will not compromise the cultural rights, values and expectations of Aboriginal people. This project will prioritise partnerships, community engagement, community benefit, sustainability, transferability, and capacity building and therefore uphold the cultural rights and values of Aboriginal people. In this six-phase project we will; 1) Establish a community reference group and advisory committee; 2) Explore the health information needs and preferences of Aboriginal people with arthritis; 3) Synthesise the existing key recommendations in high quality clinical practice guidelines on arthritis care; 4) Culturally adapt key clinical recommendations; 5) Develop culturally appropriate arthritis resources and; 6) Qualitatively evaluate the developed resources.</description><identifier>ISSN: 1932-6203</identifier><identifier>EISSN: 1932-6203</identifier><identifier>DOI: 10.1371/journal.pone.0261670</identifier><identifier>PMID: 34941954</identifier><language>eng</language><publisher>United States: Public Library of Science</publisher><subject>Arthritis ; Arthritis, Rheumatoid - epidemiology ; Arthritis, Rheumatoid - ethnology ; Australia - epidemiology ; Australia - ethnology ; Australian Aboriginal and Torres Strait Islander Peoples ; Australian aborigines ; Biology and Life Sciences ; Biomedical materials ; Care and treatment ; Community ; Community involvement ; Community participation ; Demographic aspects ; Diagnosis ; Discrimination in medical care ; Economic aspects ; Empowerment ; Female ; Gout ; Gout - epidemiology ; Gout - ethnology ; Handicapped accessibility ; Health aspects ; Health care ; Health care disparities ; Health education ; Health literacy ; Health Services, Indigenous ; Hospitals ; Humans ; Information resources ; Information sources ; Lupus ; Lupus Erythematosus, Systemic - epidemiology ; Lupus Erythematosus, Systemic - ethnology ; Male ; Medical research ; Medicine and Health Sciences ; Native North Americans ; Osteoarthritis ; Osteoarthritis - epidemiology ; Osteoarthritis - ethnology ; Osteoporosis ; Pain ; Patient education ; People and Places ; Population ; Prevention ; Qualitative research ; Research methodology ; Rheumatoid arthritis ; Risk factors ; Security ; Social Sciences ; Study Protocol ; Surgery ; Sustainability ; Systemic lupus erythematosus</subject><ispartof>PloS one, 2021-12, Vol.16 (12), p.e0261670</ispartof><rights>COPYRIGHT 2021 Public Library of Science</rights><rights>2021 O’Brien et al. This is an open access article distributed under the terms of the Creative Commons Attribution License: http://creativecommons.org/licenses/by/4.0/ (the “License”), which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2021 O’Brien et al 2021 O’Brien et al</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c692t-64f9704c4290618a3f0273b957ab221ff9dc585197b4f30429d224b011b833</citedby><cites>FETCH-LOGICAL-c692t-64f9704c4290618a3f0273b957ab221ff9dc585197b4f30429d224b011b833</cites><orcidid>0000-0002-1677-4540</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8699613/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC8699613/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,725,778,782,862,883,2098,2917,23849,27907,27908,53774,53776,79351,79352</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/34941954$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>Suppiah, Vijayaprakash</contributor><creatorcontrib>O'Brien, Penny</creatorcontrib><creatorcontrib>Conley, Brooke</creatorcontrib><creatorcontrib>Bunzli, Samantha</creatorcontrib><creatorcontrib>Bullen, Jonathan</creatorcontrib><creatorcontrib>Coffin, Juli</creatorcontrib><creatorcontrib>Persaud, Jennifer</creatorcontrib><creatorcontrib>Gunatillake, Tilini</creatorcontrib><creatorcontrib>Dowsey, Michelle M</creatorcontrib><creatorcontrib>Choong, Peter F</creatorcontrib><creatorcontrib>Lin, Ivan</creatorcontrib><title>Staying moving, staying strong: Protocol for developing culturally appropriate information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout</title><title>PloS one</title><addtitle>PLoS One</addtitle><description>Addressing disparities in arthritis care is an important yet unmet health need for Aboriginal and Torres Strait Islander people in Australia (respectfully Aboriginal people herewith). Despite the significant prevalence and burden of arthritis within Aboriginal communities, access to care for arthritis is low. One means to reduce existing disparities in health care is to address current challenges relating to the appropriateness and acceptability of health care information resources for Aboriginal people. Health information sources can help to empower patients and their families to have greater involvement in their care and to engage in self-management of their condition. Despite an extensive range of arthritis information resources being available, currently no resources have been culturally adapted and developed in collaboration with Aboriginal consumers with arthritis. This paper outlines the processes that will be undertaken within the Staying Moving, Staying Strong project. This project aims to develop culturally secure arthritis information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout.
The overarching principle guiding this project is cultural security, referring to the incorporation of processes such that the research will not compromise the cultural rights, values and expectations of Aboriginal people. This project will prioritise partnerships, community engagement, community benefit, sustainability, transferability, and capacity building and therefore uphold the cultural rights and values of Aboriginal people. In this six-phase project we will; 1) Establish a community reference group and advisory committee; 2) Explore the health information needs and preferences of Aboriginal people with arthritis; 3) Synthesise the existing key recommendations in high quality clinical practice guidelines on arthritis care; 4) Culturally adapt key clinical recommendations; 5) Develop culturally appropriate arthritis resources and; 6) Qualitatively evaluate the developed resources.</description><subject>Arthritis</subject><subject>Arthritis, Rheumatoid - epidemiology</subject><subject>Arthritis, Rheumatoid - ethnology</subject><subject>Australia - epidemiology</subject><subject>Australia - ethnology</subject><subject>Australian Aboriginal and Torres Strait Islander Peoples</subject><subject>Australian aborigines</subject><subject>Biology and Life Sciences</subject><subject>Biomedical materials</subject><subject>Care and treatment</subject><subject>Community</subject><subject>Community involvement</subject><subject>Community participation</subject><subject>Demographic aspects</subject><subject>Diagnosis</subject><subject>Discrimination in medical care</subject><subject>Economic aspects</subject><subject>Empowerment</subject><subject>Female</subject><subject>Gout</subject><subject>Gout - epidemiology</subject><subject>Gout - ethnology</subject><subject>Handicapped accessibility</subject><subject>Health aspects</subject><subject>Health care</subject><subject>Health care disparities</subject><subject>Health education</subject><subject>Health literacy</subject><subject>Health Services, Indigenous</subject><subject>Hospitals</subject><subject>Humans</subject><subject>Information resources</subject><subject>Information sources</subject><subject>Lupus</subject><subject>Lupus Erythematosus, Systemic - epidemiology</subject><subject>Lupus Erythematosus, Systemic - ethnology</subject><subject>Male</subject><subject>Medical research</subject><subject>Medicine and Health Sciences</subject><subject>Native North Americans</subject><subject>Osteoarthritis</subject><subject>Osteoarthritis - epidemiology</subject><subject>Osteoarthritis - ethnology</subject><subject>Osteoporosis</subject><subject>Pain</subject><subject>Patient education</subject><subject>People and Places</subject><subject>Population</subject><subject>Prevention</subject><subject>Qualitative research</subject><subject>Research methodology</subject><subject>Rheumatoid arthritis</subject><subject>Risk factors</subject><subject>Security</subject><subject>Social Sciences</subject><subject>Study Protocol</subject><subject>Surgery</subject><subject>Sustainability</subject><subject>Systemic lupus 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Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>O'Brien, Penny</au><au>Conley, Brooke</au><au>Bunzli, Samantha</au><au>Bullen, Jonathan</au><au>Coffin, Juli</au><au>Persaud, Jennifer</au><au>Gunatillake, Tilini</au><au>Dowsey, Michelle M</au><au>Choong, Peter F</au><au>Lin, Ivan</au><au>Suppiah, Vijayaprakash</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Staying moving, staying strong: Protocol for developing culturally appropriate information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout</atitle><jtitle>PloS one</jtitle><addtitle>PLoS One</addtitle><date>2021-12-23</date><risdate>2021</risdate><volume>16</volume><issue>12</issue><spage>e0261670</spage><pages>e0261670-</pages><issn>1932-6203</issn><eissn>1932-6203</eissn><abstract>Addressing disparities in arthritis care is an important yet unmet health need for Aboriginal and Torres Strait Islander people in Australia (respectfully Aboriginal people herewith). Despite the significant prevalence and burden of arthritis within Aboriginal communities, access to care for arthritis is low. One means to reduce existing disparities in health care is to address current challenges relating to the appropriateness and acceptability of health care information resources for Aboriginal people. Health information sources can help to empower patients and their families to have greater involvement in their care and to engage in self-management of their condition. Despite an extensive range of arthritis information resources being available, currently no resources have been culturally adapted and developed in collaboration with Aboriginal consumers with arthritis. This paper outlines the processes that will be undertaken within the Staying Moving, Staying Strong project. This project aims to develop culturally secure arthritis information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout.
The overarching principle guiding this project is cultural security, referring to the incorporation of processes such that the research will not compromise the cultural rights, values and expectations of Aboriginal people. This project will prioritise partnerships, community engagement, community benefit, sustainability, transferability, and capacity building and therefore uphold the cultural rights and values of Aboriginal people. In this six-phase project we will; 1) Establish a community reference group and advisory committee; 2) Explore the health information needs and preferences of Aboriginal people with arthritis; 3) Synthesise the existing key recommendations in high quality clinical practice guidelines on arthritis care; 4) Culturally adapt key clinical recommendations; 5) Develop culturally appropriate arthritis resources and; 6) Qualitatively evaluate the developed resources.</abstract><cop>United States</cop><pub>Public Library of Science</pub><pmid>34941954</pmid><doi>10.1371/journal.pone.0261670</doi><tpages>e0261670</tpages><orcidid>https://orcid.org/0000-0002-1677-4540</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1932-6203 |
| ispartof | PloS one, 2021-12, Vol.16 (12), p.e0261670 |
| issn | 1932-6203 1932-6203 |
| language | eng |
| recordid | cdi_plos_journals_2613258518 |
| source | MEDLINE; DOAJ Directory of Open Access Journals; Elektronische Zeitschriftenbibliothek - Frei zugängliche E-Journals; Public Library of Science (PLoS) Journals Open Access; PubMed Central; Free Full-Text Journals in Chemistry |
| subjects | Arthritis Arthritis, Rheumatoid - epidemiology Arthritis, Rheumatoid - ethnology Australia - epidemiology Australia - ethnology Australian Aboriginal and Torres Strait Islander Peoples Australian aborigines Biology and Life Sciences Biomedical materials Care and treatment Community Community involvement Community participation Demographic aspects Diagnosis Discrimination in medical care Economic aspects Empowerment Female Gout Gout - epidemiology Gout - ethnology Handicapped accessibility Health aspects Health care Health care disparities Health education Health literacy Health Services, Indigenous Hospitals Humans Information resources Information sources Lupus Lupus Erythematosus, Systemic - epidemiology Lupus Erythematosus, Systemic - ethnology Male Medical research Medicine and Health Sciences Native North Americans Osteoarthritis Osteoarthritis - epidemiology Osteoarthritis - ethnology Osteoporosis Pain Patient education People and Places Population Prevention Qualitative research Research methodology Rheumatoid arthritis Risk factors Security Social Sciences Study Protocol Surgery Sustainability Systemic lupus erythematosus |
| title | Staying moving, staying strong: Protocol for developing culturally appropriate information for Aboriginal people with osteoarthritis, rheumatoid arthritis, lupus and gout |
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