"It All Depends": Patient and Decision Partner Experiences in Cancer Clinical Trial Decision-Making

被引:2
作者
Gray, Tamryn F. [1 ,2 ]
Allgood, Sarah J. [3 ]
Nolan, Marie T. [3 ]
Gallo, Joseph J. [3 ,4 ]
Han, Hae-Ra [3 ,4 ]
Clayman, Marla L. [5 ]
Budhathoki, Chakra [3 ]
Lansey, Dina G. [6 ]
Wenzel, Jennifer [3 ,6 ]
机构
[1] Dana Farber Canc Inst, Boston, MA 02115 USA
[2] Harvard Med Sch, Boston, MA 02115 USA
[3] Johns Hopkins Sch Nursing, Baltimore, MD USA
[4] Johns Hopkins Bloomberg Sch Publ Hlth, Baltimore, MD USA
[5] Ctr Healthcare Org & Implementat Res CHOIR, VA Hlth Serv Res & Dev Serv, Bedford, MA USA
[6] Johns Hopkins Sch Med, Dept Oncol, Baltimore, MD USA
关键词
decision-making; families; psychosocial aspects of cancer; qualitative; cancer; FAMILY INVOLVEMENT; AFRICAN-AMERICAN; INFORMED-CONSENT; PROSTATE-CANCER; PARTICIPATION; PREFERENCES; ENROLLMENT; BARRIERS; PERSPECTIVES; INFORMATION;
D O I
10.1177/10497323221083355
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.
引用
收藏
页码:887 / 901
页数:15
相关论文
共 90 条
[31]   Decision-making process in patients before entering phase III cancer clinical trials: A pilot study [J].
Huizinga, GA ;
Sleijfer, DT ;
van de Wiel, HBM ;
van der Graaf, WTA .
CANCER NURSING, 1999, 22 (02) :119-125
[32]   Fertility Preservation Decision-Making Communication between Young Adult Cancer Patients and Their Romantic Partners: An Application of the DECIDE Typology [J].
Iannarino, Nicholas T. ;
Palmer-Wackerly, Angela L. .
HEALTH COMMUNICATION, 2022, 37 (06) :778-789
[33]   Quality of informed consent: A new measure of understanding among research subjects [J].
Joffe, S ;
Cook, EF ;
Cleary, PD ;
Clark, JW ;
Weeks, JC .
JOURNAL OF THE NATIONAL CANCER INSTITUTE, 2001, 93 (02) :139-147
[34]   Participation in Clinical Research: Perspectives of Adult Patients and Parents of Pediatric Patients Undergoing Hematopoietic Stem Cell Transplantation [J].
Keusch, Florian ;
Rao, Rohini ;
Chang, Lawrence ;
Lepkowski, James ;
Reddy, Pavan ;
Choi, Sung Won .
BIOLOGY OF BLOOD AND MARROW TRANSPLANTATION, 2014, 20 (10) :1604-1611
[35]   Distributed Cognition in Cancer Treatment Decision Making: An Application of the DECIDE Decision-Making Styles Typology [J].
Krieger, Janice L. ;
Krok-Schoen, Jessica L. ;
Dailey, Phokeng M. ;
Palmer-Wackerly, Angela L. ;
Schoenberg, Nancy ;
Paskett, Electra D. ;
Dignan, Mark .
QUALITATIVE HEALTH RESEARCH, 2017, 27 (08) :1146-1159
[36]   Caregiver Perceptions of Their Influence on Cancer Treatment Decision Making: Intersections of Language, Identity, and Illness [J].
Krieger, Janice L. ;
Palmer-Wackerly, Angela L. ;
Krok-Schoen, Jessica L. ;
Dailey, Phokeng M. ;
Wojno, Julianne C. ;
Schoenberg, Nancy ;
Paskett, Electra D. ;
Dignan, Mark .
JOURNAL OF LANGUAGE AND SOCIAL PSYCHOLOGY, 2015, 34 (06) :640-656
[37]   Comprehension of Randomization and Uncertainty in Cancer Clinical Trials Decision Making Among Rural, Appalachian Patients [J].
Krieger, Janice L. ;
Palmer-Wackerly, Angela ;
Dailey, Phokeng M. ;
Krok-Schoen, Jessica L. ;
Schoenberg, Nancy E. ;
Paskett, Electra D. .
JOURNAL OF CANCER EDUCATION, 2015, 30 (04) :743-748
[38]  
Kunneman Marleen, 2017, Alzheimers Dement (N Y), V3, P314, DOI 10.1016/j.trci.2017.04.002
[39]   The TRIO Framework: Conceptual insights into family caregiver involvement and influence throughout cancer treatment decision-making [J].
Laidsaar-Powell, Rebekah ;
Butow, Phyllis ;
Charles, Cathy ;
Gafni, Amiram ;
Entwistle, Vikki ;
Epstein, Ronald ;
Juraskova, Ilona .
PATIENT EDUCATION AND COUNSELING, 2017, 100 (11) :2035-2046
[40]   Family involvement in cancer treatment decision-making: A qualitative study of patient, family, and clinician attitudes and experiences [J].
Laidsaar-Powell, Rebekah ;
Butow, Phyllis ;
Bu, Stella ;
Charles, Cathy ;
Gafni, Amiram ;
Fisher, Alana ;
Juraskova, Ilona .
PATIENT EDUCATION AND COUNSELING, 2016, 99 (07) :1146-1155