Julia Meguro, Mariana Khawand-Azoulai, Heidy N Medina, Magela Pons, Michael T Huber, Frank J Penedo, Patricia I Moreno
{"title":"Patient Activation and Shared Decision-Making Among Hispanics/Latinos With Metastatic Cancer: A Qualitative Study.","authors":"Julia Meguro, Mariana Khawand-Azoulai, Heidy N Medina, Magela Pons, Michael T Huber, Frank J Penedo, Patricia I Moreno","doi":"10.1002/pon.70145","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Patient activation is established when patients are equipped with the necessary knowledge, skills, and motivation to meaningfully participate in managing their health and, along with shared decision-making, improves clinical outcomes like treatment adherence. Little is known regarding patient activation among Hispanics/Latinos with metastatic cancer, who report worse quality of life and symptom burden compared to non-Hispanic/Latino Whites.</p><p><strong>Aims: </strong>This study aimed to characterize barriers and facilitators to patient activation and shared decision-making among English- and Spanish-speaking Hispanics/Latinos with metastatic cancer.</p><p><strong>Methods: </strong>Three, 2-h focus groups with Hispanics/Latinos with metastatic solid tumors (N = 22) were audio-recorded and transcribed. Semi-structured interviews addressed experiences living with metastatic cancer, palliative care beliefs, and communication with healthcare team. Barriers and facilitators were identified through secondary analysis of interviews.</p><p><strong>Results: </strong>Barriers included: (a) feeling overwhelmed by treatment decision-making; (b) lack of clarity regarding treatment and diagnosis; (c) lack of symptom management resources; and (d) concerns regarding English fluency and medical terminology. Facilitators included: (a) self-advocacy for treatment options and quality of life resources; (b) feeling comfortable asking care team questions; (c) having a skilled support system; and (d) avoiding unhelpful medical information. Patient activation levels varied, but all participants expressed a desire to be proactively included in decisions throughout care.</p><p><strong>Conclusions: </strong>Results suggest that patient activation may be promoted in this population through the provision of information/resources that are timely, accessible, and relevant to their care needs and active inclusion of patients in decision-making. Findings will guide culturally-adapted interventions that increase patient activation and shared decision-making.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":"34 4","pages":"e70145"},"PeriodicalIF":3.3000,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11976033/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Psycho‐Oncology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1002/pon.70145","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Background: Patient activation is established when patients are equipped with the necessary knowledge, skills, and motivation to meaningfully participate in managing their health and, along with shared decision-making, improves clinical outcomes like treatment adherence. Little is known regarding patient activation among Hispanics/Latinos with metastatic cancer, who report worse quality of life and symptom burden compared to non-Hispanic/Latino Whites.
Aims: This study aimed to characterize barriers and facilitators to patient activation and shared decision-making among English- and Spanish-speaking Hispanics/Latinos with metastatic cancer.
Methods: Three, 2-h focus groups with Hispanics/Latinos with metastatic solid tumors (N = 22) were audio-recorded and transcribed. Semi-structured interviews addressed experiences living with metastatic cancer, palliative care beliefs, and communication with healthcare team. Barriers and facilitators were identified through secondary analysis of interviews.
Results: Barriers included: (a) feeling overwhelmed by treatment decision-making; (b) lack of clarity regarding treatment and diagnosis; (c) lack of symptom management resources; and (d) concerns regarding English fluency and medical terminology. Facilitators included: (a) self-advocacy for treatment options and quality of life resources; (b) feeling comfortable asking care team questions; (c) having a skilled support system; and (d) avoiding unhelpful medical information. Patient activation levels varied, but all participants expressed a desire to be proactively included in decisions throughout care.
Conclusions: Results suggest that patient activation may be promoted in this population through the provision of information/resources that are timely, accessible, and relevant to their care needs and active inclusion of patients in decision-making. Findings will guide culturally-adapted interventions that increase patient activation and shared decision-making.
期刊介绍：
Psycho-Oncology is concerned with the psychological, social, behavioral, and ethical aspects of cancer. This subspeciality addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease, and that of their families and caretakers; and the psychological, behavioral and social factors that may influence the disease process. Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.
This international journal is published twelve times a year and will consider contributions to research of clinical and theoretical interest. Topics covered are wide-ranging and relate to the psychosocial aspects of cancer and AIDS-related tumors, including: epidemiology, quality of life, palliative and supportive care, psychiatry, psychology, sociology, social work, nursing and educational issues.
Special reviews are offered from time to time. There is a section reviewing recently published books. A society news section is available for the dissemination of information relating to meetings, conferences and other society-related topics. Summary proceedings of important national and international symposia falling within the aims of the journal are presented.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
