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Gepubliceerd in: Quality of Life Research 5/2015

01-05-2015 | Patient Engagement Special Section

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

Auteurs: Christina L. Rush, Margaret Darling, Maria Gloria Elliott, Ivis Febus-Sampayo, Charlene Kuo, Juliana Muñoz, Ysabel Duron, Migdalia Torres, Claudia Campos Galván, Florencia Gonzalez, Larisa Caicedo, Anna Nápoles, Roxanne E. Jensen, Emily Anderson, Kristi D. Graves

Gepubliceerd in: Quality of Life Research | Uitgave 5/2015

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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.
vorige artikel Engaging stakeholders to develop a depression management decision support tool in a tribal health system
volgende artikel Low-income minority patient engagement with automated telephonic depression assessment and impact on health outcomes
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Metagegevens
Titel
Engaging Latina cancer survivors, their caregivers, and community partners in a randomized controlled trial: Nueva Vida intervention
Auteurs
Christina L. Rush
Margaret Darling
Maria Gloria Elliott
Ivis Febus-Sampayo
Charlene Kuo
Juliana Muñoz
Ysabel Duron
Migdalia Torres
Claudia Campos Galván
Florencia Gonzalez
Larisa Caicedo
Anna Nápoles
Roxanne E. Jensen
Emily Anderson
Kristi D. Graves
Publicatiedatum
01-05-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0847-9

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