RESUMEN
PURPOSE: We qualitatively explored the unique needs and preferences for financial toxicity screening and interventions to address financial toxicity among adolescents and emerging adults (younger AYAs: 15-25 years) with cancer and their caregivers. METHODS: We recruited English- or Spanish-speaking younger AYAs who were treated for cancer within the past 2 years and their caregivers. Semi-structured interviews were conducted to explore preferences for screening and interventional study development to address financial toxicity. The data were coded using conventional content analysis. Codes were reviewed with the study team, and interviews continued until saturation was reached; codes were consolidated into categories and themes during consensus discussions. RESULTS: We interviewed 17 participants; nine were younger AYAs. Seven of the 17 preferred to speak Spanish. We identified three cross-cutting themes: burden, support, and routine, consistent, and clear. The burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying about the AYA's physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. CONCLUSION: Younger AYAs and their caregivers experience significant financial challenges and unmet health-related social needs during cancer treatment and often rely on key supports to alleviate these unmet needs. When developing interventions to mitigate financial toxicity, clinicians and health systems should prioritize clear, consistent, and tailorable approaches to support younger AYA cancer survivors and their families.
Asunto(s)
Cuidadores , Neoplasias , Humanos , Adolescente , Neoplasias/psicología , Neoplasias/terapia , Neoplasias/economía , Masculino , Femenino , Adulto Joven , Cuidadores/psicología , Adulto , Costo de Enfermedad , Apoyo Social , Investigación Cualitativa , Comparación Transcultural , Necesidades y Demandas de Servicios de Salud , Estrés Financiero/psicologíaRESUMEN
OBJECTIVE: Mobile health (mHealth) technology is now widely used across health conditions and populations. The rigorous development of these tools has yielded improved health outcomes, yet the ideal approach for developing mHealth tools continues to evolve, indicating the need for rigorous usability evaluation methods. This study compares two usability evaluation methods - cognitive interviews and usability assessments employing a think-aloud approach - for adapting an evidence-based mHealth tool from English into Spanish. METHODS: We conducted cognitive interviews and usability assessments using a think-aloud protocol to evaluate the usability of an HIV mHealth application among 40 Spanish-speaking adults with HIV in New York City, NY, and La Romana, Dominican Republic. The Health IT Usability Evaluation Model (Health-ITUEM) was used to guide the analysis of qualitative data collected from each method. RESULTS: Participants (N = 40) averaged 43 years old (SD = 12.26; range 20-79), identified primarily Hispanic/Latino (92.5 %), and resided in La Romana (50 %) or New York City (50 %). Both usability evaluation methods yielded similar findings, highlighting learnability and information needs as crucial components of participant feedback for the mHealth application. Cognitive interviews captured participants' perspectives on the app's interface and design. On the other hand, results from usability assessments offered insights into participants' competency while interacting with the mHealth tool. CONCLUSION: Findings from this study highlight the contributions and limitations of including cognitive interviews and task-based usability assessments using a think-aloud approach in mHealth usability testing. Future research should employ a multi-method approach, incorporating complementary usability evaluation methods and engaging participants in multiple assessments. Using complementary usability evaluation methods may provide a more comprehensive understanding of the usability and participant experience aspects of a mHealth tool compared to using a single usability evaluation method.
Asunto(s)
Infecciones por VIH , Aplicaciones Móviles , Telemedicina , Adulto , Humanos , Exactitud de los Datos , Telemedicina/métodos , Adulto Joven , Persona de Mediana Edad , AncianoRESUMEN
The use of mobile health (mHealth technology) can be an effective intervention when considering chronic illnesses. Qualitative research methods were used to identify specific content and features for a mobile app for smoking cessation amongst people living with HIV (PWH). We conducted five focus group sessions followed by two Design Sessions with PWH who were or are currently chronic cigarette smokers. The first five groups focused on the perceived barriers and facilitators to smoking cessation amongst PWH. The two Design Sessions leveraged the findings from the focus group sessions and were used to determine the optimal features and user interface of a mobile app to support smoking cessation amongst PWH. Thematic analysis was conducted using the Health Belief Model and Fogg's Functional Triad. Seven themes emerged from our focus group sessions: history of smoking, triggers, consequences of quitting smoking, motivation to quit, messages to help quit, quitting strategies, and mental health-related challenges. Functional details of the app were identified during the Design Sessions and used to build a functional prototype.