Development of a culturally anchored qualitative approach to conduct and analyze focus group narratives collected in diné (Navajo) communities to understand the impacts of the gold king mine spill of 2015

The Gold King Mine Spill (Spill) occurred in August 2015 upstream from Silverton, Colorado and released three million gallons of contaminated water into the Animas River, a tributary to the San Juan River that flows across the Navajo Nation. Using principles of community-engaged re-search, the Gold King Mine Spill Diné Exposure Project co-developed a culturally anchored approach to conduct focus groups and analyze narratives collected in three Diné (Navajo) communities along the San Juan River within 9 months of the Spill. Focus group questions were designed to document the socio-cultural impacts of the Spill. This paper: (1) outlines the partnerships and approvals; (2) describes focus group design, training, data collection and analysis; and (3) reflects on the use of a culturally anchored approach in Indigenous, specifically Diné-centered research. Diné social and cultural etiquette and concepts of relationality were used to adapt standard (non-Indigenous) qualitative methods. Findings describe community perceptions of short-term impacts of the disaster, as well as past and present injustices, communication related to the Spill, and concerns of persistent threats to Diné lifeways. The culturally anchored approach was critical in fostering trust with Diné participants and aligned with the candor of the discussions. © 2021 by the authors. Licensee MDPI, Basel, Switzerland.Open access journalThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]

A systematic review of patient-reported outcome instruments of dermatologic adverse events associated with targeted cancer therapies

Purpose Dermatologic adverse events (dAEs) in cancer treatment are frequent with the use of targeted therapies. These dAEs have been shown to have significant impact on health-related quality of life (HRQoL). While standardized assessment tools have been developed for physicians to assess severity of dAEs, there is a discord between objective and subjective measures. The identification of patient-reported outcome (PRO) instruments useful in the context of targeted cancer therapies is therefore important in both the clinical and research settings for the overall evaluation of dAEs and their impact on HRQoL. Methods A comprehensive, systematic literature search of published articles was conducted by two independent reviewers in order to identify PRO instruments previously utilized in patient populations with dAEs from targeted cancer therapies. The identified PRO instruments were studied to determine which HRQoL issues relevant to dAEs were addressed, as well as the process of development and validation of these instruments. Results Thirteen articles identifying six PRO instruments met the inclusion criteria. Four instruments were general dermatology (Skindex-16©, Skindex-29©, Dermatology Life Quality Index (DLQI), and DIELH-24) and two were symptom-specific (functional assessment of cancer therapy-epidermal growth factor receptor inhibitor-18 (FACT-EGFRI-18) and hand-foot syndrome 14 (HFS-14)). Conclusions While there are several PRO instruments that have been tested in the context of targeted cancer therapy, additional work is needed to develop new instruments and to further validate the instruments identified in this study in patients receiving targeted therapies