Advance care planning readiness, barriers, and facilitators among seriously ill Black older adults and their surrogates: A mixed methods study
Advance care planning (ACP) supports communication and medical decision-making and is best conceptualized as part of the care planning continuum. Black older adults have lower ACP engagement and poorer quality of care in serious illness. Surrogates are essential to effective ACP but are rarely integ...
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| Veröffentlicht in: | Palliative & supportive care 2025-01, Vol.23, p.e15, Article e15 |
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| creator | Howe, Rebecca Kumar, Shreya Slattery, Laura Milton, Stephanie Tonkikh, Orly Ogugu, Everlyne G. Bidwell, Julie T. Bell, Janice Amadi, Grace Agnoli, Alicia |
| description | Advance care planning (ACP) supports communication and medical decision-making and is best conceptualized as part of the care planning continuum. Black older adults have lower ACP engagement and poorer quality of care in serious illness. Surrogates are essential to effective ACP but are rarely integrated in care planning. Our objective was to describe readiness, barriers, and facilitators of ACP among seriously ill Black older adults and their surrogates.
We used an explanatory sequential mixed methods study design. The setting was 2 ambulatory specialty clinics of an academic medical center and 1 community church in Northern California, USA. Participants included older adults and surrogates. Older adults were aged 60+, self-identified as Black, and had received care at 1 of the 2 clinics or were a member of the church congregation. Surrogates were aged 18+ and could potentially make medical decisions for the older adult. The validated ACP engagement survey was used to assess confidence and readiness for ACP. What "matters most" and barriers and facilitators to ACP employed questions from established ACP materials and trials. Semi-structured interviews were conducted after surveys to further explain survey results.
Older adults (
= 30) and surrogates (
= 12) were confident that they could engage in ACP (4.1 and 4.7 out of 5), but many were not ready for these conversations (3.1 and 3.9 out of 5). A framework with 4 themes - illness experience, social connections, interaction with health providers, burden - supports identification of barriers and facilitators to ACP engagement.
We identified barriers and facilitators and present a framework to support ACP engagement. Future research can assess the impact of this framework on communication and decision-making. |
| doi_str_mv | 10.1017/S1478951524001548 |
| format | Article |
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We used an explanatory sequential mixed methods study design. The setting was 2 ambulatory specialty clinics of an academic medical center and 1 community church in Northern California, USA. Participants included older adults and surrogates. Older adults were aged 60+, self-identified as Black, and had received care at 1 of the 2 clinics or were a member of the church congregation. Surrogates were aged 18+ and could potentially make medical decisions for the older adult. The validated ACP engagement survey was used to assess confidence and readiness for ACP. What "matters most" and barriers and facilitators to ACP employed questions from established ACP materials and trials. Semi-structured interviews were conducted after surveys to further explain survey results.
Older adults (
= 30) and surrogates (
= 12) were confident that they could engage in ACP (4.1 and 4.7 out of 5), but many were not ready for these conversations (3.1 and 3.9 out of 5). A framework with 4 themes - illness experience, social connections, interaction with health providers, burden - supports identification of barriers and facilitators to ACP engagement.
We identified barriers and facilitators and present a framework to support ACP engagement. Future research can assess the impact of this framework on communication and decision-making.</description><identifier>ISSN: 1478-9515</identifier><identifier>ISSN: 1478-9523</identifier><identifier>EISSN: 1478-9523</identifier><identifier>DOI: 10.1017/S1478951524001548</identifier><identifier>PMID: 39807567</identifier><language>eng</language><publisher>New York, USA: Cambridge University Press</publisher><subject>Adults ; Advance Care Planning - standards ; Advance Care Planning - statistics & numerical data ; Advance directives ; Aged ; Aged, 80 and over ; Black or African American - psychology ; Black or African American - statistics & numerical data ; California ; Confidence ; Decision Making ; Enrollments ; Female ; Heart failure ; Humans ; Illnesses ; Interviews ; Loneliness ; Male ; Middle Aged ; Older people ; Original Article ; Polls & surveys ; Qualitative Research ; Spirituality ; Surveys and Questionnaires ; Verbal communication ; Web portals ; White</subject><ispartof>Palliative & supportive care, 2025-01, Vol.23, p.e15, Article e15</ispartof><rights>The Author(s), 2025. Published by Cambridge University Press.</rights><rights>The Author(s), 2025. Published by Cambridge University Press. This work is licensed under the Creative Commons Attribution License This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited. (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c255t-657efd8a200c2f60967558fd2563b2dece2c07e4cfc34e88f9ff6c4ec24ee5c23</cites><orcidid>0000-0001-5986-1612</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.cambridge.org/core/product/identifier/S1478951524001548/type/journal_article$$EHTML$$P50$$Gcambridge$$Hfree_for_read</linktohtml><link.rule.ids>164,314,776,780,27901,27902,55603</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39807567$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Howe, Rebecca</creatorcontrib><creatorcontrib>Kumar, Shreya</creatorcontrib><creatorcontrib>Slattery, Laura</creatorcontrib><creatorcontrib>Milton, Stephanie</creatorcontrib><creatorcontrib>Tonkikh, Orly</creatorcontrib><creatorcontrib>Ogugu, Everlyne G.</creatorcontrib><creatorcontrib>Bidwell, Julie T.</creatorcontrib><creatorcontrib>Bell, Janice</creatorcontrib><creatorcontrib>Amadi, Grace</creatorcontrib><creatorcontrib>Agnoli, Alicia</creatorcontrib><title>Advance care planning readiness, barriers, and facilitators among seriously ill Black older adults and their surrogates: A mixed methods study</title><title>Palliative & supportive care</title><addtitle>Pall Supp Care</addtitle><description>Advance care planning (ACP) supports communication and medical decision-making and is best conceptualized as part of the care planning continuum. Black older adults have lower ACP engagement and poorer quality of care in serious illness. Surrogates are essential to effective ACP but are rarely integrated in care planning. Our objective was to describe readiness, barriers, and facilitators of ACP among seriously ill Black older adults and their surrogates.
We used an explanatory sequential mixed methods study design. The setting was 2 ambulatory specialty clinics of an academic medical center and 1 community church in Northern California, USA. Participants included older adults and surrogates. Older adults were aged 60+, self-identified as Black, and had received care at 1 of the 2 clinics or were a member of the church congregation. Surrogates were aged 18+ and could potentially make medical decisions for the older adult. The validated ACP engagement survey was used to assess confidence and readiness for ACP. What "matters most" and barriers and facilitators to ACP employed questions from established ACP materials and trials. Semi-structured interviews were conducted after surveys to further explain survey results.
Older adults (
= 30) and surrogates (
= 12) were confident that they could engage in ACP (4.1 and 4.7 out of 5), but many were not ready for these conversations (3.1 and 3.9 out of 5). A framework with 4 themes - illness experience, social connections, interaction with health providers, burden - supports identification of barriers and facilitators to ACP engagement.
We identified barriers and facilitators and present a framework to support ACP engagement. Future research can assess the impact of this framework on communication and decision-making.</description><subject>Adults</subject><subject>Advance Care Planning - standards</subject><subject>Advance Care Planning - statistics & numerical data</subject><subject>Advance directives</subject><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Black or African American - psychology</subject><subject>Black or African American - statistics & numerical data</subject><subject>California</subject><subject>Confidence</subject><subject>Decision Making</subject><subject>Enrollments</subject><subject>Female</subject><subject>Heart failure</subject><subject>Humans</subject><subject>Illnesses</subject><subject>Interviews</subject><subject>Loneliness</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Older people</subject><subject>Original Article</subject><subject>Polls & surveys</subject><subject>Qualitative Research</subject><subject>Spirituality</subject><subject>Surveys and Questionnaires</subject><subject>Verbal communication</subject><subject>Web portals</subject><subject>White</subject><issn>1478-9515</issn><issn>1478-9523</issn><issn>1478-9523</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2025</creationdate><recordtype>article</recordtype><sourceid>IKXGN</sourceid><sourceid>EIF</sourceid><recordid>eNp1kctuFDEQRa0IRB7wAdlEltiwYIif_WA3RASQIrEIrFseuzxx4m5Pym7E_ATfjJMMQQpiVaXSubeqdAk55uwdZ7w9veSq7XrNtVCMca26PXJwN1r0Wshnjz3X--Qw52vGhJCsfUH2Zd-xVjftAfm1dD_MZIFag0A30UxTmNYUwbgwQc5v6cogBsDamclRb2yIoZiSMFMzpspmwJDmHLc0xEg_RGNvaIoOkBo3x5LvdeUKAtI8I6a1KZDf0yUdw09wdIRylVymucxu-5I89yZmeLWrR-T7-cdvZ58XF18_fTlbXiys0LosGt2Cd50RjFnhG9Y3rdadd0I3ciUcWBCWtaCst1JB1_ne-8YqsEIBaCvkEXnz4LvBdDtDLsMYsoVY_4f6yyC51rIRfd9X9PUT9DrNONXr7immVCdZpfgDZTHljOCHDYbR4HbgbLgLa_gnrKo52TnPqxHco-JPOhWQO1MzrjC4Nfzd_X_b32YhoJ0</recordid><startdate>20250114</startdate><enddate>20250114</enddate><creator>Howe, Rebecca</creator><creator>Kumar, Shreya</creator><creator>Slattery, Laura</creator><creator>Milton, Stephanie</creator><creator>Tonkikh, Orly</creator><creator>Ogugu, Everlyne G.</creator><creator>Bidwell, Julie T.</creator><creator>Bell, Janice</creator><creator>Amadi, Grace</creator><creator>Agnoli, Alicia</creator><general>Cambridge University Press</general><scope>IKXGN</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>ASE</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>7X8</scope><orcidid>https://orcid.org/0000-0001-5986-1612</orcidid></search><sort><creationdate>20250114</creationdate><title>Advance care planning readiness, barriers, and facilitators among seriously ill Black older adults and their surrogates: A mixed methods study</title><author>Howe, Rebecca ; Kumar, Shreya ; Slattery, Laura ; Milton, Stephanie ; Tonkikh, Orly ; Ogugu, Everlyne G. ; Bidwell, Julie T. ; Bell, Janice ; Amadi, Grace ; Agnoli, Alicia</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c255t-657efd8a200c2f60967558fd2563b2dece2c07e4cfc34e88f9ff6c4ec24ee5c23</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2025</creationdate><topic>Adults</topic><topic>Advance Care Planning - standards</topic><topic>Advance Care Planning - statistics & numerical data</topic><topic>Advance directives</topic><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Black or African American - psychology</topic><topic>Black or African American - statistics & numerical data</topic><topic>California</topic><topic>Confidence</topic><topic>Decision Making</topic><topic>Enrollments</topic><topic>Female</topic><topic>Heart failure</topic><topic>Humans</topic><topic>Illnesses</topic><topic>Interviews</topic><topic>Loneliness</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Older people</topic><topic>Original Article</topic><topic>Polls & surveys</topic><topic>Qualitative Research</topic><topic>Spirituality</topic><topic>Surveys and Questionnaires</topic><topic>Verbal communication</topic><topic>Web portals</topic><topic>White</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Howe, Rebecca</creatorcontrib><creatorcontrib>Kumar, Shreya</creatorcontrib><creatorcontrib>Slattery, Laura</creatorcontrib><creatorcontrib>Milton, Stephanie</creatorcontrib><creatorcontrib>Tonkikh, Orly</creatorcontrib><creatorcontrib>Ogugu, Everlyne G.</creatorcontrib><creatorcontrib>Bidwell, Julie T.</creatorcontrib><creatorcontrib>Bell, Janice</creatorcontrib><creatorcontrib>Amadi, Grace</creatorcontrib><creatorcontrib>Agnoli, Alicia</creatorcontrib><collection>Cambridge Journals Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>British Nursing Index</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>MEDLINE - Academic</collection><jtitle>Palliative & supportive care</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Howe, Rebecca</au><au>Kumar, Shreya</au><au>Slattery, Laura</au><au>Milton, Stephanie</au><au>Tonkikh, Orly</au><au>Ogugu, Everlyne G.</au><au>Bidwell, Julie T.</au><au>Bell, Janice</au><au>Amadi, Grace</au><au>Agnoli, Alicia</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Advance care planning readiness, barriers, and facilitators among seriously ill Black older adults and their surrogates: A mixed methods study</atitle><jtitle>Palliative & supportive care</jtitle><addtitle>Pall Supp Care</addtitle><date>2025-01-14</date><risdate>2025</risdate><volume>23</volume><spage>e15</spage><pages>e15-</pages><artnum>e15</artnum><issn>1478-9515</issn><issn>1478-9523</issn><eissn>1478-9523</eissn><abstract>Advance care planning (ACP) supports communication and medical decision-making and is best conceptualized as part of the care planning continuum. Black older adults have lower ACP engagement and poorer quality of care in serious illness. Surrogates are essential to effective ACP but are rarely integrated in care planning. Our objective was to describe readiness, barriers, and facilitators of ACP among seriously ill Black older adults and their surrogates.
We used an explanatory sequential mixed methods study design. The setting was 2 ambulatory specialty clinics of an academic medical center and 1 community church in Northern California, USA. Participants included older adults and surrogates. Older adults were aged 60+, self-identified as Black, and had received care at 1 of the 2 clinics or were a member of the church congregation. Surrogates were aged 18+ and could potentially make medical decisions for the older adult. The validated ACP engagement survey was used to assess confidence and readiness for ACP. What "matters most" and barriers and facilitators to ACP employed questions from established ACP materials and trials. Semi-structured interviews were conducted after surveys to further explain survey results.
Older adults (
= 30) and surrogates (
= 12) were confident that they could engage in ACP (4.1 and 4.7 out of 5), but many were not ready for these conversations (3.1 and 3.9 out of 5). A framework with 4 themes - illness experience, social connections, interaction with health providers, burden - supports identification of barriers and facilitators to ACP engagement.
We identified barriers and facilitators and present a framework to support ACP engagement. Future research can assess the impact of this framework on communication and decision-making.</abstract><cop>New York, USA</cop><pub>Cambridge University Press</pub><pmid>39807567</pmid><doi>10.1017/S1478951524001548</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0001-5986-1612</orcidid><oa>free_for_read</oa></addata></record> |
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| subjects | Adults Advance Care Planning - standards Advance Care Planning - statistics & numerical data Advance directives Aged Aged, 80 and over Black or African American - psychology Black or African American - statistics & numerical data California Confidence Decision Making Enrollments Female Heart failure Humans Illnesses Interviews Loneliness Male Middle Aged Older people Original Article Polls & surveys Qualitative Research Spirituality Surveys and Questionnaires Verbal communication Web portals White |
| title | Advance care planning readiness, barriers, and facilitators among seriously ill Black older adults and their surrogates: A mixed methods study |
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