TY - JOUR
T1 - Allowing adolescents and young adults to plan their end-of-life care
AU - Wiener, Lori
AU - Zadeh, Sima
AU - Battles, Haven
AU - Baird, Kristin
AU - Ballard, Elizabeth
AU - Osherow, Janet
AU - Pao, Maryland
PY - 2012/11
Y1 - 2012/11
N2 - OBJECTIVE: The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness. METHODS: Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document. RESULTS: AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered. CONCLUSIONS: AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care.
AB - OBJECTIVE: The objective of this study was to assess and compare the usefulness, helpfulness, and stress associated with reviewing a previously adapted advance care planning guide, My Thoughts, My Wishes, My Voice, in comparison with the widely used adult document Five Wishes by adolescents and young adults (AYAs) living with a serious illness. METHODS: Fifty-two participants (age 16-28) living with metastatic or recurrent cancer or HIV infection (acquired at birth or early in life) were presented pages randomly from My Thoughts, My Wishes, My Voice and, Five Wishes, and asked to rank 25 items on several factors, including how likely they would be to complete each statement. Participant opinion on suggested changes in content, design, format, and style was obtained and resulted in development of a new document. RESULTS: AYAs living with a life-threatening illness want to be able to choose and record (1) the kind of medical treatment they want and do not want, (2) how they would liked to be cared for, (3) information for their family and friends to know, and (4) how they would like to be remembered. CONCLUSIONS: AYA views of what should be included in an advance care planning guide were incorporated into a new document, Voicing My Choices, that provides youth, families and providers an opportunity to reduce the silence around the dying process by allowing an opportunity to share one's voice. We provide guidance on how to incorporate this tool into care.
KW - Adolescents
KW - Advance care planning
KW - Cancer
KW - Decision-making
KW - End-of-life
KW - HIV
KW - Young adults
UR - http://www.scopus.com/inward/record.url?scp=84868628457&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84868628457&partnerID=8YFLogxK
U2 - 10.1542/peds.2012-0663
DO - 10.1542/peds.2012-0663
M3 - Article
C2 - 23045560
AN - SCOPUS:84868628457
SN - 0031-4005
VL - 130
SP - 897
EP - 905
JO - Pediatrics
JF - Pediatrics
IS - 5
ER -