Who Will Speak for Me? Disparities in Palliative Care Research with “Unbefriended” Adolescents Living with HIV/AIDS
Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted in six pediatric hospital-based HIV-clinics, locat...
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| Veröffentlicht in: | Journal of palliative medicine 2017-10, Vol.20 (10), p.1135-1138 |
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| container_end_page | 1138 |
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| container_issue | 10 |
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| container_title | Journal of palliative medicine |
| container_volume | 20 |
| creator | Lee, Brittney C. Houston, Patricia E. Rana, Sohail R. Kimmel, Allison L. D'Angelo, Lawrence J. Lyon, Maureen E. on behalf of the Adolescent Palliat |
| description | Objective:
To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study.
Method:
A longitudinal, single-blinded, multisite randomized controlled trial, conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities.
Results:
Between July 2010 and June 2014, 366 adolescents aged 14 to 21 years with HIV/AIDS were approached for participation. From among 125 ineligible adolescents living with HIV/AIDS, 62 (50%) were ineligible because they could not identify a surrogate decision-maker they trusted enough to make end-of-life decisions for them, if they were unable to do so for themselves.
Conclusion:
Healthy People 2020's goal of increasing the proportion of adolescents connected to a trusted adult with whom they can talk about serious problems is unmet among adolescents living with a serious illness.
Discussion:
Ethical concerns for justice, dignity, and access to health services are raised as adolescents who most need support in future medical decision making are least likely to have this support. |
| doi_str_mv | 10.1089/jpm.2017.0053 |
| format | Article |
| fullrecord | <record><control><sourceid>pubmedcentral_cross</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_5647485</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>pubmedcentral_primary_oai_pubmedcentral_nih_gov_5647485</sourcerecordid><originalsourceid>FETCH-LOGICAL-c331t-854de82d9cb1385fbda9fb51ce70d00f0b4c361e59ea6d769c131602ba7ba093</originalsourceid><addsrcrecordid>eNpVkM9OwkAQhzdGExE9et8XKMy23f65aAiokGA0gnLcbLtTWCxts1sh3ngQfTmexDYYE08zyfx-XyYfIdcMegyiuL-uNj0XWNgD4N4J6TDOQycMfThtdogDJ3BZdE4urF0DNAXgHbJbrEq60HlOZxXKd5qVhj7iLR1pW0mja42W6oI-yzzXstZbpENpkL6gRWnSFd3pekUP-6_XIsHMaCwUqsP-mw5UmaNNsagtneqtLpbH6Hjy1h9MRrNLcpbJ3OLV7-yS-f3dfDh2pk8Pk-Fg6qSex2on4r7CyFVxmjAv4lmiZJwlnKUYggLIIPFTL2DIY5SBCoM4ZR4LwE1kmEiIvS65OWKrj2SDqv3HyFxURm-k-RSl1OL_pdArsSy3ggd-6Ee8AThHQGpKaw1mf10GorUuGuuitS5a694PLHt54g</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype></control><display><type>article</type><title>Who Will Speak for Me? Disparities in Palliative Care Research with “Unbefriended” Adolescents Living with HIV/AIDS</title><source>Alma/SFX Local Collection</source><creator>Lee, Brittney C. ; Houston, Patricia E. ; Rana, Sohail R. ; Kimmel, Allison L. ; D'Angelo, Lawrence J. ; Lyon, Maureen E. ; on behalf of the Adolescent Palliat</creator><creatorcontrib>Lee, Brittney C. ; Houston, Patricia E. ; Rana, Sohail R. ; Kimmel, Allison L. ; D'Angelo, Lawrence J. ; Lyon, Maureen E. ; on behalf of the Adolescent Palliat</creatorcontrib><description>Objective:
To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study.
Method:
A longitudinal, single-blinded, multisite randomized controlled trial, conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities.
Results:
Between July 2010 and June 2014, 366 adolescents aged 14 to 21 years with HIV/AIDS were approached for participation. From among 125 ineligible adolescents living with HIV/AIDS, 62 (50%) were ineligible because they could not identify a surrogate decision-maker they trusted enough to make end-of-life decisions for them, if they were unable to do so for themselves.
Conclusion:
Healthy People 2020's goal of increasing the proportion of adolescents connected to a trusted adult with whom they can talk about serious problems is unmet among adolescents living with a serious illness.
Discussion:
Ethical concerns for justice, dignity, and access to health services are raised as adolescents who most need support in future medical decision making are least likely to have this support.</description><identifier>ISSN: 1096-6218</identifier><identifier>EISSN: 1557-7740</identifier><identifier>DOI: 10.1089/jpm.2017.0053</identifier><language>eng</language><publisher>140 Huguenot Street, 3rd FloorNew Rochelle, NY 10801USA: Mary Ann Liebert, Inc</publisher><subject>Brief Reports</subject><ispartof>Journal of palliative medicine, 2017-10, Vol.20 (10), p.1135-1138</ispartof><rights>Copyright 2017, Mary Ann Liebert, Inc. 2017</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c331t-854de82d9cb1385fbda9fb51ce70d00f0b4c361e59ea6d769c131602ba7ba093</citedby><cites>FETCH-LOGICAL-c331t-854de82d9cb1385fbda9fb51ce70d00f0b4c361e59ea6d769c131602ba7ba093</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,780,784,885,27924,27925</link.rule.ids></links><search><creatorcontrib>Lee, Brittney C.</creatorcontrib><creatorcontrib>Houston, Patricia E.</creatorcontrib><creatorcontrib>Rana, Sohail R.</creatorcontrib><creatorcontrib>Kimmel, Allison L.</creatorcontrib><creatorcontrib>D'Angelo, Lawrence J.</creatorcontrib><creatorcontrib>Lyon, Maureen E.</creatorcontrib><creatorcontrib>on behalf of the Adolescent Palliat</creatorcontrib><title>Who Will Speak for Me? Disparities in Palliative Care Research with “Unbefriended” Adolescents Living with HIV/AIDS</title><title>Journal of palliative medicine</title><description>Objective:
To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study.
Method:
A longitudinal, single-blinded, multisite randomized controlled trial, conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities.
Results:
Between July 2010 and June 2014, 366 adolescents aged 14 to 21 years with HIV/AIDS were approached for participation. From among 125 ineligible adolescents living with HIV/AIDS, 62 (50%) were ineligible because they could not identify a surrogate decision-maker they trusted enough to make end-of-life decisions for them, if they were unable to do so for themselves.
Conclusion:
Healthy People 2020's goal of increasing the proportion of adolescents connected to a trusted adult with whom they can talk about serious problems is unmet among adolescents living with a serious illness.
Discussion:
Ethical concerns for justice, dignity, and access to health services are raised as adolescents who most need support in future medical decision making are least likely to have this support.</description><subject>Brief Reports</subject><issn>1096-6218</issn><issn>1557-7740</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2017</creationdate><recordtype>article</recordtype><recordid>eNpVkM9OwkAQhzdGExE9et8XKMy23f65aAiokGA0gnLcbLtTWCxts1sh3ngQfTmexDYYE08zyfx-XyYfIdcMegyiuL-uNj0XWNgD4N4J6TDOQycMfThtdogDJ3BZdE4urF0DNAXgHbJbrEq60HlOZxXKd5qVhj7iLR1pW0mja42W6oI-yzzXstZbpENpkL6gRWnSFd3pekUP-6_XIsHMaCwUqsP-mw5UmaNNsagtneqtLpbH6Hjy1h9MRrNLcpbJ3OLV7-yS-f3dfDh2pk8Pk-Fg6qSex2on4r7CyFVxmjAv4lmiZJwlnKUYggLIIPFTL2DIY5SBCoM4ZR4LwE1kmEiIvS65OWKrj2SDqv3HyFxURm-k-RSl1OL_pdArsSy3ggd-6Ee8AThHQGpKaw1mf10GorUuGuuitS5a694PLHt54g</recordid><startdate>201710</startdate><enddate>201710</enddate><creator>Lee, Brittney C.</creator><creator>Houston, Patricia E.</creator><creator>Rana, Sohail R.</creator><creator>Kimmel, Allison L.</creator><creator>D'Angelo, Lawrence J.</creator><creator>Lyon, Maureen E.</creator><creator>on behalf of the Adolescent Palliat</creator><general>Mary Ann Liebert, Inc</general><scope>AAYXX</scope><scope>CITATION</scope><scope>5PM</scope></search><sort><creationdate>201710</creationdate><title>Who Will Speak for Me? Disparities in Palliative Care Research with “Unbefriended” Adolescents Living with HIV/AIDS</title><author>Lee, Brittney C. ; Houston, Patricia E. ; Rana, Sohail R. ; Kimmel, Allison L. ; D'Angelo, Lawrence J. ; Lyon, Maureen E. ; on behalf of the Adolescent Palliat</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c331t-854de82d9cb1385fbda9fb51ce70d00f0b4c361e59ea6d769c131602ba7ba093</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2017</creationdate><topic>Brief Reports</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Lee, Brittney C.</creatorcontrib><creatorcontrib>Houston, Patricia E.</creatorcontrib><creatorcontrib>Rana, Sohail R.</creatorcontrib><creatorcontrib>Kimmel, Allison L.</creatorcontrib><creatorcontrib>D'Angelo, Lawrence J.</creatorcontrib><creatorcontrib>Lyon, Maureen E.</creatorcontrib><creatorcontrib>on behalf of the Adolescent Palliat</creatorcontrib><collection>CrossRef</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Journal of palliative medicine</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Lee, Brittney C.</au><au>Houston, Patricia E.</au><au>Rana, Sohail R.</au><au>Kimmel, Allison L.</au><au>D'Angelo, Lawrence J.</au><au>Lyon, Maureen E.</au><au>on behalf of the Adolescent Palliat</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Who Will Speak for Me? Disparities in Palliative Care Research with “Unbefriended” Adolescents Living with HIV/AIDS</atitle><jtitle>Journal of palliative medicine</jtitle><date>2017-10</date><risdate>2017</risdate><volume>20</volume><issue>10</issue><spage>1135</spage><epage>1138</epage><pages>1135-1138</pages><issn>1096-6218</issn><eissn>1557-7740</eissn><abstract>Objective:
To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study.
Method:
A longitudinal, single-blinded, multisite randomized controlled trial, conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities.
Results:
Between July 2010 and June 2014, 366 adolescents aged 14 to 21 years with HIV/AIDS were approached for participation. From among 125 ineligible adolescents living with HIV/AIDS, 62 (50%) were ineligible because they could not identify a surrogate decision-maker they trusted enough to make end-of-life decisions for them, if they were unable to do so for themselves.
Conclusion:
Healthy People 2020's goal of increasing the proportion of adolescents connected to a trusted adult with whom they can talk about serious problems is unmet among adolescents living with a serious illness.
Discussion:
Ethical concerns for justice, dignity, and access to health services are raised as adolescents who most need support in future medical decision making are least likely to have this support.</abstract><cop>140 Huguenot Street, 3rd FloorNew Rochelle, NY 10801USA</cop><pub>Mary Ann Liebert, Inc</pub><doi>10.1089/jpm.2017.0053</doi><tpages>4</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1096-6218 |
| ispartof | Journal of palliative medicine, 2017-10, Vol.20 (10), p.1135-1138 |
| issn | 1096-6218 1557-7740 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_5647485 |
| source | Alma/SFX Local Collection |
| subjects | Brief Reports |
| title | Who Will Speak for Me? Disparities in Palliative Care Research with “Unbefriended” Adolescents Living with HIV/AIDS |
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