Abstract
Cancer and its treatment can significantly impact health-related quality of life (HRQOL) (J Pain Symptom Manag 9 (3):186-192, 1994; Soc Sci Med 46:1569-1584, 1998), particularly for Hispanics (Healthcare Financ Rev 29 (4):23-40, 2008; Psycho-Oncology 21 (2):115-124, 2012). Moreover, providers of cancer support for this population may encounter unique challenges. Grounded in social capital theory, this study identified Spanish-speaking, Hispanic breast cancer survivor support needs and preferences for a mHealth intervention. A user-centered, community-engaged research design was employed, consisting of focus groups made up of constituents from a local Hispanic-serving, cancer support organization. Focus group audio-recordings, translated into English, were coded using a grounded theory analytic approach. First, lead researchers read the complete transcripts to obtain a general sense of the discussion. Next, coding rules were established (e.g., code at the most granular level; double and triple code if necessary, code exhaustively) and initial codebook was created through open-coding. Three new coders were trained to establish requisite kappa statistic levels (≥.70) for inter-rater reliability. With training and discussion, kappa estimates reached .81-.88. Focus group (n = 31) results revealed a mHealth intervention targeting Hispanic cancer patients should not only offer information and support on disease/treatment effects but also respond to the individual's HRQOL, particularly emotional and social challenges. Specifically, participants expressed a strong desire for Spanish content and to connect with others who had gone through a similar experience. Overall, participants indicated they would have access to and would use such an intervention. Findings indicate positive support for a mHealth tool, which is culturally tailored to Spanish speakers, is available in Spanish, and connects cancer patients with survivors.
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