RESUMO
Introduction: The LEAD (Life-Planning in Early Alzheimer's and Other Dementias) Guide is an advance care planning (ACP) tool for use within the context of dementia. To meet the needs of diverse communities, we sought to create a culturally sensitive and translated Latin American Spanish version of the guide. Methods: First, the guide was translated into Spanish. Second, we conducted forward and backward translations. Third, focus groups with Spanish-speaking Latino adults were held (healthy adults and current or previous dementia caregivers). Results: Descriptive analysis revealed three domains regarding the Latin American Spanish version of the LEAD Guide (LA LEAD Guide): (1) Family Dynamics (e.g., preventing family conflict), (2) Cultural Expectations (e.g., familial caregiving responsibility), and (3) Health Literacy (e.g., lack of knowledge about ACP). Discussion: This process created the Latin American LEAD Guide as a culturally and linguistically appropriate and acceptable ACP tool for older Latino adults. Health Equity Implications: The availability of culturally sensitive and Spanish ACP resources could facilitate greater health care access and research participation among Latino Americans by diminishing the linguistic and health literacy barriers for those not comfortably proficient in English.
RESUMO
OBJECTIVE: Patients facing an advanced cancer diagnosis require clear communication with their clinicians. Technology has been utilized in many different capacities to navigate communication in cancer care, but few authors examine the specific areas of communication from a theoretical perspective. The purpose of this literature review was to (1) identify articles focused on technology-based communication strategies to improve health outcomes in individuals with advanced cancer, and (2) using Epstein and Street's framework, identify areas in which technology-based communication has been used to improve health outcomes, and (3) identify gaps that exist in technology-based communication care in patients with advanced cancer. METHODS: A systematic search was conducted which returned 446 articles. Using Epstein and Street's 2007 framework, the final sample was 39. RESULTS: Nine clinical trials, 29 observational studies, and 1 case study were identified. The articles were categorized into one area within Epstein and Street's areas of communication. Many of the articles examined the patient's and provider's acceptability and feasibility of technology-based methods of communication, while other articles examined their efficacy. CONCLUSIONS: While research studies were identified in each of the areas of communication, the majority of technology-based communication strategies were focused on the exchange of information between patients and their providers. Further research and the development of technology-based communication interventions assessed through clinical trials are needed in the areas of healing relationships and making decisions in cancer care. Additionally, the communication strategies found effective at improving health outcomes in advanced cancer should begin implementation into clinical practice, therefore reaching more patients.