The Experiences of Elderly Immigrants of Mexican Origin With Life-Limiting Illness: A Critical Ethnography
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Although limited studies have explored the health care needs of elderly immigrants of Mexican origin, Mexican immigrants account for the largest immigrant group in the United States. As of 2014, 28% of the total immigrant population is of Mexican origin, with 8% of Mexican immigrants being age 65 years and older (Zong & Batalova, 2016). Furthermore, studies to-date do not make recommendations for nursing practice. The purpose of this qualitative study was to describe and explain the health care experiences of elderly immigrants of Mexican origin who face life-limiting illness in the United States. The study aimed to answer the following research question: What are the perceptions of elderly immigrants of Mexican origin with life-limiting illness about their experiences with the U.S. health care system?
The study was approved by the University of Texas Medical Branch Institutional Review Board (IRB), protocol 13-0427. Participants were recruited at churches, community centers, and clinics, places where IRB-approved flyers were posted. Sites were selected that primarily service the Hispanic community. Recruitment also occurred by word-of-mouth. A purposive, non-random sample of 13 participants was enrolled. Eligible participants were self-identified as first or second generation immigrants of Mexican origin; aged 65 years or older; with a diagnosis of heart disease, diabetes, cancer, respiratory disease, or previous stroke; and English speaking. Participants were interviewed face-to-face by the investigator in a private area of their choosing and convenience. Interview protocol followed a semi-structured technique. The researcher also asked demographic questions of participants and recorded the responses on an investigator-developed demographic form. Interviews were digitally recorded. The research employed a critical ethnography design to answer the research question (Carspecken, 2012, 2016). The semi-structured, audio-taped interviews were analyzed using Carspecken’s five stages of critical qualitative research.
Low and high level coding techniques identified the three large categories of REACTING to the diagnosis, RESPONDING to the illness, and RELATING to health care providers.
Large Category--REACTING to the Diagnosis, with sub-categories Feelings, and Family Experiences.
The category REACTING to the diagnosis emerged from the data as participants described what it was like when they learned that they had one of the diagnoses and then how they felt as they adjusted to the news. REACTING also included previous observations and experiences with family members who had the same diagnosis, and how that shaped the participants’ own reaction. The lower level categories of (a) feelings and (b) family experiences organized into the high level code of REACTING to the diagnosis. REACTING to the diagnosis encompassed feelings, the depth of emotions that individuals experienced when diagnosed with diabetes, stroke, heart disease, lung disease, or cancer. Participants who had diabetes were particularly descriptive about the feelings of devastation, fear, and uncertainty. Several participants described how they had watched or lived through the negative health experiences of close family members, and how they feared that for themselves. Based on experiences they had observed with family members, participants were afraid they would face the same kinds of health outcomes.
Large Category--RESPONDING to the Illness, with sub-categories Self-management, Self-advocacy, and Community Interaction.
RESPONDING to the illness related to the adjustments and life changes participants made for the new diagnosis. RESPONDING included lower level categories of (a) actions to self-manage the disease; (b) efforts at self-advocacy; and (c) interaction with the community in order to help other people. Participants discussed commitment and efforts to comply with physicians’ instructions and what they called “the rules” to manage their conditions. Inherent in participants’ self-management plans were their efforts to advocate for themselves. When participants felt like the communication from health care providers was poor or dissatisfactory, participants decided to find another provider; some even requested they be discharged from the hospital. Participants described unique ways of reaching out to the community to share their own experiences and to help others with the same diagnosis, including suggestions for how they could be optimally supported.
Large Category--RELATING to the Health Care Providers, with a sub-category of Experiences with Physicians and Nurses.
RELATING to Health Care Providers encompassed the range of both positive and negative communications and experiences that participants had with their health care providers, which in turn affected participants’ understanding of their condition and their experiences with health care. RELATING to the Health Care Providers had lower level categories of (a) communication with doctors and (b) communication with nurses. Participants were particularly sensitive to perceived lack of communication from their providers. This lack of attention and communication did not support their cultural norms, simpatía or personalismo, nor did the hurriedness align with their time orientation. Participants had varied and unpredictable experiences with nurses. Some described nurses in positive ways, but unfortunately most participants described negative experiences with nurses. RELATING to Health Care Providers meant the communications and experiences that participants had with their health care providers, specifically their doctors and nurses, which in turn affected participants’ understanding of their condition and their experiences with health care.
The purpose of this qualitative study was to describe and explain the health care experiences of elderly immigrants of Mexican origin who face life-limiting illness in the United States. This critical ethnography, philosophically informed by Jürgen Habermas’s critical social theory and guided by Bronfenbrenner’s ecological model, answered the research question “What are the perceptions of elderly immigrants of Mexican origin with life-limiting illness about their experiences with the health care system in the United States?” Low and high level coding techniques identified high level categories of REACTING to the diagnosis, RESPONDING to the illness, and RELATIONSHIPS with health care providers.This qualitative, critically-oriented study of the life-limiting illness experiences of elderly immigrants to the United States offers increased understanding about elderly immigrants of Mexican origin and their health care needs to ultimately achieve cultural understanding, and health care and policy change. The research is important to nursing because of the likelihood that many nurses will care for elderly immigrants in a variety of different care settings. Nurses are on the front line of patient care in a health care system affected by a political, social, and economic environment that is often emotionally charged with the issue of immigration controversies. Thus, studies that give voice to the stories of elderly immigrant participants who are experiencing life limiting illnesses may guide recommendations that will improve the health of elderly immigrants of Mexican origin. Realities of disparities in health care, which have been well supported by the literature, confront everyday nursing practice. The project contribution is significant because it informs nursing practice, nursing education, and public policy through its consideration of the multiple influences of community, social, and political factors on delivery of care to elderly immigrants of Mexican origin from a critically-oriented perspective. Although the sample size limits generalizability, findings suggest more research is needed to improve health care delivery to this population. In particular, the immediate emotional needs when diagnosed, appropriate assistance while learning to self-manage, and the paramount role of physicians and nurses in the elders’ health care decisions merit further inquiry.