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Engaging Latina cancer survivors, their caregivers, and community partners in a randomized controlled trial: Nueva Vida intervention

Quality of Life Research volume 24, pages 1107–1118 (2015)Cite this article

Abstract

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.

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Acknowledgments

The authors would like to extend a special thank you to all of the study team members and participants for their individual contributions to this research. The research is supported by the Patient-Centered Outcomes Research Institute (PCORI; AD-12-11-5365, Graves) and is registered with ClinicalTrials.gov (NCT02222337). Funding was also provided in part through NIH/NCI Grant P30-CA051008, Grant # UL1TR000101 (previously UL1RR031975) from the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), through the Clinical and Translational Science Awards Program (CTSA), a trademark of DHHS, part of the Roadmap Initiative, “Re-Engineering the Clinical Research Enterprise,” and the National Institute on Aging Grant 1 P30-A615272 (Nápoles) and National Cancer Institute Grant U54CA153511 (Nápoles). The content of this manuscript is solely the responsibility of the authors and does not necessarily represent the official views of the Patient-Centered Outcomes Research Institute, National Cancer Institute, or the National Institutes of Health.

Ethical standard

This research was approved by the Georgetown University Institutional Review Board and has been performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki and its later amendments. All persons who have participated to date have given their informed consent, and any future participants will give their informed consent prior to their inclusion in the study.

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Affiliations

  1. Lombardi Comprehensive Cancer Center, Georgetown University, 3300 Whitehaven Street, NW, Suite 4100, Washington, DC, 20007, USA

    Christina L. Rush, Charlene Kuo, Juliana Muñoz, Roxanne E. Jensen & Kristi D. Graves

  2. Nueva Vida, N. Washington Street, Suite 300, Alexandria, VA, 22314, USA

    Margaret Darling, Maria Gloria Elliott & Claudia Campos Galván

  3. SHARE, 1501 Broadway, Suite 704A, New York, NY, 10036, USA

    Ivis Febus-Sampayo

  4. Latinas Contra Cancer, 255 North Market Street, Suite 175, San Jose, CA, 95110, USA

    Ysabel Duron

  5. Gilda’s Club NYC, 195 West Houston, New York, NY, 10014, USA

    Migdalia Torres

  6. Neiswanger Institute for Bioethics and Health Policy, Stritch School of Medicine, Loyola University Chicago, 2160 S. First Avenue, Bldg. 120, Room 280, Maywood, IL, 60153, USA

    Emily Anderson

  7. Howard University, 2041 Georgia Avenue, Washington, DC, 20060, USA

    Florencia Gonzalez

  8. Latino Health Disparity Issues, Washington, DC, USA

    Larisa Caicedo

  9. University of California, San Francisco, 3333 California St., Suite 335, Box 0856, San Francisco, CA, 94118, USA

    Anna Nápoles

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  1. Christina L. Rush
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  2. Margaret Darling
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  14. Emily Anderson
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  15. Kristi D. Graves
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Correspondence to Kristi D. Graves.

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Rush, C.L., Darling, M., Elliott, M.G. et al. Engaging Latina cancer survivors, their caregivers, and community partners in a randomized controlled trial: Nueva Vida intervention. Qual Life Res 24, 1107–1118 (2015). https://doi.org/10.1007/s11136-014-0847-9

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Keywords

  • Quality of life
  • Patient-centered outcomes research
  • Community-based participatory research
  • Latinos
  • Breast cancer
  • Intervention studies