{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T03:15:04Z","timestamp":1787022904378,"version":"build-2736575974"},"reference-count":62,"publisher":"American Academy of Pediatrics (AAP)","issue":"6","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2016,12,1]]},"abstract":"<jats:sec>\n                    <jats:title>BACKGROUND AND OBJECTIVE:<\/jats:title>\n                    <jats:p>Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile, even if emotionally intense, in a fully powered randomized controlled trial.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>METHODS:<\/jats:title>\n                    <jats:p>We conducted a prospective 2-arm randomized controlled trial at 6 US urban hospitals. Adolescent\/family member dyads were randomized to receive the 1-session-a-week 3-session FAmily-CEntered Advance Care Planning (FACE) pACP intervention (1, ACP Survey; 2, Goals of Care Conversation\/Treatment Preferences; 3, Completion of Advance Directive) or active comparator (1, Developmental History; 2, Safety Tips; 3, Nutrition\/Exercise). The Satisfaction Questionnaire was administered to participants independently after each session by a blinded research assistant.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>RESULTS:<\/jats:title>\n                    <jats:p>We enrolled 53% of eligible participants and intervened with 97 adolescent\/family dyads. Adolescents ranged in age from 14 to 21 years; 54% were male individuals; 93% African American; and 73% perinatally infected. Attendance was 99% for all 3 sessions in each arm. At session 3, FACE adolescents and family dyad members, respectively, found the session useful (98%, 98%) and helpful (98%, 100%), despite feelings of sadness (25%, 17%). FACE adolescents\u2019 improvement in the total subscale A score (useful, helpful, like a load off my mind, satisfied, something I needed to do, courageous, worthwhile) was better than control adolescents at session 3 (\u03b2 = 1.16, P = .02). There were no adverse events.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>CONCLUSIONS:<\/jats:title>\n                    <jats:p>FACE enabled worthwhile conversations, while simultaneously eliciting intense emotions. No participants withdrew, 99% of those enrolled completed each session, and there were no adverse events, evidence of pACP\u2019s feasibility, acceptability, and safety.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1542\/peds.2016-1854","type":"journal-article","created":{"date-parts":[[2016,11,1]],"date-time":"2016-11-01T05:07:21Z","timestamp":1477976841000},"source":"Crossref","is-referenced-by-count":31,"title":["Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV"],"prefix":"10.1542","volume":"138","author":[{"given":"Ronald H.","family":"Dallas","sequence":"first","affiliation":[{"name":"Department of Infectious Diseases, St Jude Children\u2019s Research Hospital, Memphis, Tennessee;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison","family":"Kimmel","sequence":"additional","affiliation":[{"name":"Division of Adolescent and Young Adult Medicine, Center for Translational Science\/Children\u2019s Research Institute, Children\u2019s National, Washington, District of Columbia;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Megan L.","family":"Wilkins","sequence":"additional","affiliation":[{"name":"Department of Infectious Diseases, St Jude Children\u2019s Research Hospital, Memphis, Tennessee;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sohail","family":"Rana","sequence":"additional","affiliation":[{"name":"Howard University College of Medicine, Washington, District of Columbia;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ana","family":"Garcia","sequence":"additional","affiliation":[{"name":"The University of Miami Miller School of Medicine, Miami, Florida; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yao I.","family":"Cheng","sequence":"additional","affiliation":[{"name":"Division of Adolescent and Young Adult Medicine, Center for Translational Science\/Children\u2019s Research Institute, Children\u2019s National, Washington, District of Columbia;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jichuan","family":"Wang","sequence":"additional","affiliation":[{"name":"Division of Adolescent and Young Adult Medicine, Center for Translational Science\/Children\u2019s Research Institute, Children\u2019s National, Washington, District of Columbia;"},{"name":"The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen E.","family":"Lyon","sequence":"additional","affiliation":[{"name":"Division of Adolescent and Young Adult Medicine, Center for Translational Science\/Children\u2019s Research Institute, Children\u2019s National, Washington, District of Columbia;"},{"name":"The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"for the Adolescent Palliative Care Consortium.","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2016,12,1]]},"reference":[{"key":"2021120905032100000_B1","unstructured":"Friebert\u2008S, Williams\u2008C; National Hospice and Palliative Care Organization. Facts and figures: pediatric palliative and hospice care in America. Available at: http:\/\/www.nhpco.org\/sites\/default\/files\/public\/quality\/Pediatric_Facts-Figures.pdf. Accessed October 4, 2016"},{"key":"2021120905032100000_B2","unstructured":"State initiatives in end-of-life care. Focus creating a new policy framework for pediatric palliative care. Issue 16. Available at: www.rwjf.org\/content\/dam\/files\/legacy-files\/article-files\/2\/State_Initiatives_EOL16.pdf. 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