caa a22 4500 606180249 CHVBK 20210128100805.0 cr unu---uuuuu 210128e20150501xx s 000 0 eng 10.1007/s11136-014-0847-9 doi (NATIONALLICENCE)springer-10.1007/s11136-014-0847-9 Engaging Latina cancer survivors, their caregivers, and community partners in a randomized controlled trial: Nueva Vida intervention [Elektronische Daten] [Christina Rush, Margaret Darling, Maria Elliott, Ivis Febus-Sampayo, Charlene Kuo, Juliana Muñoz, Ysabel Duron, Migdalia Torres, Claudia Galván, Florencia Gonzalez, Larisa Caicedo, Anna Nápoles, Roxanne Jensen, Emily Anderson, Kristi Graves] Introduction: Few studies have evaluated interventions to improve quality of life (QOL) for Latina breast cancer survivors and caregivers. Following best practices in community-based participatory research (CBPR), we established a multi-level partnership among Latina survivors, caregivers, community-based organizations (CBOs), clinicians, and researchers to evaluate a survivor-caregiver QOL intervention. Methods: A CBO in the mid-Atlantic region, Nueva Vida, developed a patient-caregiver program called Cuidando a mis Cuidadores (Caring for My Caregivers), to improve outcomes important to Latina cancer survivors and their families. Together with an academic partner, Nueva Vida and three CBOs established a multi-level team of researchers, clinicians, Latina cancer survivors, and caregivers to conduct a national randomized trial to compare the patient-caregiver program to usual care. Results: Incorporating team feedback and programmatic considerations, we adapted the prior patient-caregiver program into an 8-session patient- and caregiver-centered intervention that includes skill-building workshops such as managing stress, communication, self-care, social well-being, and impact of cancer on sexual intimacy. We will measure QOL domains with the patient-reported outcomes measurement information system, dyadic communication between the survivor and caregiver, and survivors' adherence to recommended cancer care. To integrate the intervention within each CBO, we conducted interactive training on the protection of human subjects, qualitative interviewing, and intervention delivery. Conclusion: The development and engagement process for our QOL intervention study is innovative because it is both informed by and directly impacts underserved Latina survivors and caregivers. The CBPR-based process demonstrates successful multi-level patient engagement through collaboration among researchers, clinicians, community partners, survivors, and caregivers. Springer International Publishing Switzerland, 2014 Quality of life nationallicence Patient-centered outcomes research nationallicence Community-based participatory research nationallicence Latinos nationallicence Breast cancer nationallicence Intervention studies nationallicence Rush Christina Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut Darling Margaret Nueva Vida, N. Washington Street, Suite 300, 22314, Alexandria, VA, USA aut Elliott Maria Nueva Vida, N. Washington Street, Suite 300, 22314, Alexandria, VA, USA aut Febus-Sampayo Ivis SHARE, 1501 Broadway, Suite 704A, 10036, New York, NY, USA aut Kuo Charlene Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut Muñoz Juliana Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut Duron Ysabel Latinas Contra Cancer, 255 North Market Street, Suite 175, 95110, San Jose, CA, USA aut Torres Migdalia Gilda's Club NYC, 195 West Houston, 10014, New York, NY, USA aut Galván Claudia Nueva Vida, N. Washington Street, Suite 300, 22314, Alexandria, VA, USA aut Gonzalez Florencia Howard University, 2041 Georgia Avenue, 20060, Washington, DC, USA aut Caicedo Larisa Latino Health Disparity Issues, Washington, DC, USA aut Nápoles Anna University of California, San Francisco, 3333 California St., Suite 335, Box 0856, 94118, San Francisco, CA, USA aut Jensen Roxanne Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut Anderson Emily Neiswanger Institute for Bioethics and Health Policy, Stritch School of Medicine, Loyola University Chicago, 2160 S. First Avenue, Bldg. 120, Room 280, 60153, Maywood, IL, USA aut Graves Kristi Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1107-1118 0962-9343 24:5<1107 2015 24 11136 https://doi.org/10.1007/s11136-014-0847-9 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s11136-014-0847-9 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Rush Christina Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut NATIONALLICENCE 700 1- Darling Margaret Nueva Vida, N. Washington Street, Suite 300, 22314, Alexandria, VA, USA aut NATIONALLICENCE 700 1- Elliott Maria Nueva Vida, N. Washington Street, Suite 300, 22314, Alexandria, VA, USA aut NATIONALLICENCE 700 1- Febus-Sampayo Ivis SHARE, 1501 Broadway, Suite 704A, 10036, New York, NY, USA aut NATIONALLICENCE 700 1- Kuo Charlene Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut NATIONALLICENCE 700 1- Muñoz Juliana Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut NATIONALLICENCE 700 1- Duron Ysabel Latinas Contra Cancer, 255 North Market Street, Suite 175, 95110, San Jose, CA, USA aut NATIONALLICENCE 700 1- Torres Migdalia Gilda's Club NYC, 195 West Houston, 10014, New York, NY, USA aut NATIONALLICENCE 700 1- Galván Claudia Nueva Vida, N. Washington Street, Suite 300, 22314, Alexandria, VA, USA aut NATIONALLICENCE 700 1- Gonzalez Florencia Howard University, 2041 Georgia Avenue, 20060, Washington, DC, USA aut NATIONALLICENCE 700 1- Caicedo Larisa Latino Health Disparity Issues, Washington, DC, USA aut NATIONALLICENCE 700 1- Nápoles Anna University of California, San Francisco, 3333 California St., Suite 335, Box 0856, 94118, San Francisco, CA, USA aut NATIONALLICENCE 700 1- Jensen Roxanne Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut NATIONALLICENCE 700 1- Anderson Emily Neiswanger Institute for Bioethics and Health Policy, Stritch School of Medicine, Loyola University Chicago, 2160 S. First Avenue, Bldg. 120, Room 280, 60153, Maywood, IL, USA aut NATIONALLICENCE 700 1- Graves Kristi Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, 20007, Washington, DC, USA aut NATIONALLICENCE 773 0- Quality of Life Research Springer International Publishing 24/5(2015-05-01), 1107-1118 0962-9343 24:5<1107 2015 24 11136