1. Engaging Latina breast cancer survivors in research: building a social network research registry
- Author
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Aileen I. Fernandez, Paola Rodriguez-de-Liebana, Florencia Gonzalez, Adriana Serrano, Vanessa B. Sheppard, Nicole Fernández, Valeria Massarelli, Qi Zhu, Alejandra Hurtado-de-Mendoza, Claudia Campos, Kristi D. Graves, and Sara Gómez Trillos
- Subjects
Gerontology ,Health Knowledge, Attitudes, Practice ,Biomedical Research ,Organizations, Nonprofit ,Community organization ,Population ,Breast Neoplasms ,Social Networking ,03 medical and health sciences ,Behavioral Neuroscience ,Social support ,0302 clinical medicine ,Breast cancer ,Cancer Survivors ,medicine ,Humans ,Registries ,030212 general & internal medicine ,education ,Social network analysis ,Applied Psychology ,Original Research ,education.field_of_study ,030505 public health ,Social network ,business.industry ,Hispanic or Latino ,Middle Aged ,medicine.disease ,humanities ,Snowball sampling ,Behavioral medicine ,Female ,Patient Participation ,0305 other medical science ,business ,Psychology - Abstract
Disparities persist in breast cancer outcomes between Latina survivors and non-Hispanic Whites. Identifying methods to ensure that Latinas participate in and benefit from translational behavioral medicine research is important to reduce disparities. We developed a “Social Network Research Registry” to enhance Latina survivors’ engagement in research and explored the social networks and research/cancer organization participation in this population. We initially recruited 30 Latina breast cancer survivors (“seeds”) from community organizations and identified other survivors through snowball sampling. Guided by Social Network Analysis, we assessed the structural (e.g., size) and functional (e.g., social support) characteristics of the network, willingness to join the registry, prior research participation, involvement in cancer organizations, and interest in different types of research and roles in research. The resulting network size was 98, including 53 women who enrolled in the study and 45 who were listed in the network but did not enroll. All enrolled participants (N = 53) agreed to be part of the registry. We identified 15 participants who occupied strategic positions as hubs and/or bridges. Women who were currently involved in cancer organizations were more likely to have participated in research (70.3% vs. 18.8%); χ(2) (1, 53) = 11.97, p = .001. Most were interested in surveys/interviews (98%), behavioral interventions (96%), and becoming health promoters (79%). The Social Network Research Registry is an acceptable and feasible strategy to engage underrepresented Latina survivors in research. Social network analysis can be useful to identify members who occupy key positions to enhance recruitment and translational efforts.
- Published
- 2018
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