What do patients want? Expectations and perceptions of IVF clinic information and support regarding frozen embryo disposition.

OBJECTIVE: To describe frozen embryo holders' expectations and perceptions of IVF clinic information, support, and storage fees and their relevance to embryo disposition decision making. DESIGN: Qualitative interview study. SETTING: Three northern California IVF practices. PATIENT(S): One hundred six families (110 women and 74 men) with an average of six frozen embryos in storage for 5 years. INTERVENTION(S): Three in-depth interviews over 1 year. MAIN OUTCOME MEASURE(S): Thematic analysis of interview transcripts. RESULT(S): Although embryo holders expected that IVF clinics were under obligation to assist in the disposition decision and would be their main source of information, these expectations did not become manifest until years after embryo cryopreservation. Patients expressed a variety of preferences for the timing, format, and content of information and support, ranging from detailed written information to counselor/advocates that could provide logistical guidance and/or psychologic support. Embryo holders perceived an insufficiently defined infrastructure to facilitate donation to other couples, whereas donating to medical research was seen as less complicated and more likely to be encouraged and supported by physicians and clinics. Although increasing storage fees motivated disposition decision making, they could be interpreted as coercive and/or not reflective of actual clinic costs. CONCLUSION(S): Frozen embryo-holding patients' expectations of information and support to assist them with disposition decision making and embryo donation suggests that IVF clinics may benefit from a review of their frozen embryo counseling, storage, and disposition policies and procedures.

How couples who have undergone in vitro fertilization decide what to do with surplus frozen embryos.

In a qualitative interview study of 77 families with stored frozen embryos, we found that while embryo disposition decision making was influenced by individual life circumstances, embryo quantity/quality, personal values, embryo conceptualization, and clinic information, it was a stepwise process that could be represented as three sequential questions: (1) Will the embryos be used for additional attempts at conception? If not, (2) Will the embryos remain in storage? And if not, (3) Will the embryos be donated to other people or to science, or will they be destroyed? While almost two-thirds (63%) of participants kept their embryos in storage after 5 years, either passively through disagreement or indecision or actively to maintain embryo potential, avert feelings of loss, or as psychological or genetic "insurance," IVF clinic support and detailed information about options motivated families to make disposition decisions.

Older Motherhood and the Changing Life Course in the Era of Assisted Reproductive Technologies.

Midlife, once a focus of particular interest to gerontologists because of its implications for later life, has recently received little attention. But as new reproductive technologies have expanded in the United States, motherhood is occurring at older ages. While older motherhood is not a new social practice, what is unique is that an increasing number of women are becoming pregnant through technological means, often for the first time, at the end of their reproductive cycle. These women can be understood as part of a new middle age, engaging in new life course possibilities that respond to changing social, cultural, physical, and economic realities, and potentially extending much later in the life course. Drawing on interviews with 79 couples, we utilize symbolic interactionist conceptualizations of identity and stigma to consider how women negotiate the shifting social identities associated with older motherhood. We conclude that older motherhood will be one phenomenon contributing to an enduring change in views of what constitutes old age, and that it will be seen as occurring much later in the life course.

The uninsured and the politics of containment in U.S. health care.

State-provided health insurance has now spread throughout much of the industrialized world. The United States is a particular exception to this trend. The U.S. uninsured represents one-sixth of its population. The uninsured exemplify those on the margins of the U.S. health care system. Based on qualitative research with 215 chronically ill, uninsured ethnic minorities, I argue that the U.S. system fosters an organized approach of containment toward the uninsured that not only marginalizes them but it keeps the problem of the uninsured in check by discouraging people from using health care services. Respondents viewed the treatment they received as an assault on their dignity and experienced discrimination, depersonalization, and disenfranchisement. They avoided using the health care system whenever possible despite chronic, life-threatening illnesses. I conclude that the uninsured, as a problem of the state, lies at its very heart, with implications for the health and well-being of the uninsured as well as for the governmental systems that attempt to manage and contain them.

Strategies for disclosure: how parents approach telling their children that they were conceived with donor gametes.

OBJECTIVE: To describe how parents envision, plan, and enact disclosing to their children that they were conceived with donor gametes. DESIGN: In-depth ethnographic interviews. SETTING: Participants were recruited from 11 medical infertility practices and 1 sperm bank in Northern California. PATIENT(S): A total of 141 married couples who had conceived a child using donor gametes (62 with donor sperm and 79 with donor oocytes). INTERVENTION(S): Husbands and wives were interviewed together and separately. MAIN OUTCOME MEASURE(S): Thematic analysis of interview transcripts. RESULT(S): Disclosing parents predominantly subscribed to one of two disclosure strategies: the conviction that early disclosure is of paramount importance so that the child "always knows," or the belief that later disclosure is preferable after family routines have been established and the child has the maturity to understand biologic concepts and has developed a sense of discretion. No parent regretted disclosing, and many expressed relief. CONCLUSION(S): Parents choosing early disclosure were more at ease with the disclosure process, whereas parents choosing later disclosure reported greater uncertainty about how and when to disclose. Parents wished for more peer and/or professional support and guidance to assist them with disclosure, not only initially but continuing long after their children were born.

"Stress knocks hard on your immune system": asthma and the discourse on stress.

Stress has been described by anthropologists and other scholars as a problematic concept, a discourse, a modern metaphor, a collective representation, and a cultural resource. The vast array of academic work in the arena of stress research belies the historical reality of stress as an object of inquiry; rather, stress is presented as new, the story of its emergence intermingled with processes of industrialization, individualism, and perceptions of modern life. This article traces the uses to which the concept of stress is put in the illness narratives of persons with asthma. It argues that multiple invocations of stress not only make visible the workings of personal responsibility and individualism regarding chronic illness management in the contemporary United States but also gesture toward the social relations of sickness that lie beyond individual control.

Rethinking the biological clock: eleventh-hour moms, miracle moms and meanings of age-related infertility.

Over the past generation, aging and female reproduction have been lodged within the gendered and gendering debates regarding women's involvement in the workforce and demographic shifts toward delayed parenting that culminate in discourses on the "biological clock". Technological solutions to the biological clock, specifically in vitro fertilization, have led to clinical attempts to assess "ovarian reserve", or qualitative and quantitative changes in the ovary that correlate with aging and with successful infertility treatment. Rupturing the longstanding historical connections between menstruation and female reproductive capacity by specifically focusing on the aging of a woman's eggs, the clinical designation of "diminished ovarian reserve" has come to imply that a woman has "old eggs". This is associated in practitioners' and patients' minds with the eclipse of a woman's reproductive potential and with hidden harbingers of menopause. In an ethnographic interview study of 79 couples in the US who conceived after using donor oocytes, we found that women voiced two different narratives that described their experience and attitudes when confronted with an apparent age-related decline in their fertility. The "eleventh-hour mom" narrative was voiced by women who initially tried to become pregnant with their own eggs and turned to donated oocytes as a second-choice option, whereas the "miracle mom" narrative was expressed by women who were generally older, some of whom had entered infertility treatment hoping to conceive with their own eggs, but some who knew from the outset that it was not going to be possible. Through their narratives women not only embodied and made meaningful "diminished ovarian reserve" in varying ways that connect with cultural, social, structural/organizational, symbolic and physical aspects of aging, they reproduced the socio-biological project of the biological clock, but rooted this social project in the metaphor of "old eggs" rather than menopause.

Infertility among low-income Latinos.

OBJECTIVE: To explore the experience of infertility among low-income Latinos. DESIGN: Ethnographic qualitative interview study. SETTING: Academic research environment. PATIENT(S): One hundred eighteen Latinos who sought medical care for infertility. INTERVENTION(S): Tape-recorded interviews with 88 women and 30 men were transcribed and analyzed for emergent themes. MAIN OUTCOME MEASURE(S): Cultural beliefs regarding fertility and infertility, the value placed on having children, access to and use of health care resources, and non-biomedical approaches to having children. RESULT(S): Latino women and men believed that children were the basis of the marital relationship and that childless marriages were considered a failure. No couples had the economic resources to pursue medical treatment beyond a basic level. A difference was found in approaches to infertility treatment between women raised in the United States and those raised elsewhere, with those raised in the United States being more assertive in seeking care. Women frequently saw practitioners of Western biomedicine and humoral medicine. Women reported that they would continue trying to conceive until they reached menopause. CONCLUSION(S): Infertility is a devastating experience for Latinos that has far-reaching effects, both on women and men individually and on the couple relationship.

Parents' conceptualization of their frozen embryos complicates the disposition decision.

OBJECTIVE: To ascertain what couples think about their embryos and how they approach making a decision about disposition in light of the fact that the disposition of unused frozen embryos has significant implications for medical research and embryo donation. DESIGN: Ethnographic qualitative interview study. SETTING: Academic research environment. PATIENT(S): Fifty-eight couples who had conceived using a donor oocyte and had at least one frozen embryo in storage. MAIN OUTCOME MEASURE(S): Tape-recorded interviews with 58 wives and 37 husbands were transcribed and analyzed for emergent themes. RESULT(S): With an average of 7.1 embryos per couple, after an average of 4.2 years of storage, 72% of couples with frozen embryos had not reached a disposition decision. Most couples had not anticipated or appreciated the consequences of having surplus embryos. Parents variously conceptualized frozen embryos as biologic tissue, living entities, "virtual" children having interests that must be considered and protected, siblings of their living children, genetic or psychological "insurance policies," and symbolic reminders of their past infertility. CONCLUSION(S): The disposition decision is not only a significant and frequently unresolved issue for couples with stored frozen embryos, but their deeply personal conceptualizations of their embryos contributes to their ambivalence, uncertainty, and difficulty in reaching a decision.

Resilience in the face of serious illness among chronically ill African Americans in later life.

OBJECTIVES: The purpose of this work was to examine older African Americans' philosophies about their chronic illnesses and how those philosophies affected chronic illness management. METHODS: Three to five in-depth interviews were conducted over the course of several years with 38 respondents between the ages of 65 and 91. Both open-ended and semistructured questions were asked. RESULTS: Respondents demonstrated determination, perseverance, and tenacity no matter how serious their illnesses were. Racism was instrumental in shaping the responses of these African Americans to their illnesses through cultural values that emphasized independence, spirituality, and survival. Respondents demonstrated a resilient philosophy as they faced disabling illness. DISCUSSION: This research attests to the importance of examining racism in the analysis of how older ethnic minorities live with chronic illness, as it provides the context for understanding the development of culturally specific philosophies about illness. Resilience, as a culturally specific philosophy, is an important adjunct to chronic illness management in later life, and more needs to be understood about the dimensions that shape it by cultural group.

Resemblance talk: a challenge for parents whose children were conceived with donor gametes in the US.

The normative folk model of kinship in the US continues to attach great significance to "blood" relationships. These implicit genetic links are commonly reinforced through observations about a child's physical similarity to parents or other family members, i.e., "resemblance talk". This paper explores the meanings of resemblance and resemblance talk for parents drawing on semi-structured interviews with 148 heterosexual couples who had used a donor gamete to conceive at least one living child. For parents of children conceived with donor eggs or sperm, resemblance talk represents the ongoing threat that comments about physical appearance could stigmatize their children or cast doubt on the legitimacy of their family structure. Furthermore, these concerns were present regardless of whether a sperm or egg donor had been used and irrespective of the parents' disclosure decision, i.e., whether or not their children were told of the true nature of their conception. Parents found that resemblance talk was not only ubiquitous, unavoidable, and uncontrollable, but it also had the capacity to exacerbate ongoing uncertainties about their disclosure decision (or lack of one), worries about establishing their child within the extended family, and apprehension that insensitive remarks could make the child feel different from other family members. As a result, many couples spent considerable energy developing a variety of strategies for managing resemblance talk that included genetic plausibility arguments, "passing", and strategic silence. We conclude that parents of children conceived with a donor address and contest normative definitions of kinship and family, including stigma and otherness, resist challenges to the family they have created, and, to some extent, rework their allegiance to cultural norms to suit their own needs. Because resemblance talk and disclosure decisions are frequently tied to each other, it is likely that if the public were more accepting of difference, parents would likely feel more comfortable with disclosure. Yet resemblance talk may make it more difficult for parents to disclose, not easier, as long as attitudes about the implicit primacy of genetic connectedness prevail.

Self-care among chronically ill African Americans: culture, health disparities, and health insurance status.

Little is known about the self-care practices of chronically ill African Americans or how lack of access to health care affects self-care. Results from a qualitative interview study of 167 African Americans who had one or more chronic illnesses found that self-care practices were culturally based, and the insured reported more extensive programs of self-care. Those who had some form of health insurance much more frequently reported the influence of physicians and health education programs in self-care regimens than did those who were uninsured. It is concluded that the cultural components of self-care have been underemphasized, and further, that the potential to maximize chronic illness management through self-care strategies is not realized for those who lack access to health care.

Deadly inequality in the health care "safety net": uninsured ethnic minorities' struggle to live with life-threatening illnesses.

Forty-three million Americans are uninsured. This article explores the difficulties people experience in seeking health care through the health care "safety net," which provides most of the health care that uninsured people receive, and critiques the gaps, inconsistencies, and failures of such care. In research with 176 African Americans and Latinos who had no health insurance, it was found that they delay seeking care because of cost, do without medications, have negative views of safety net health care, and experience discrimination. As a consequence of dissatisfaction with safety net care, avoidance of the health care system was commonplace. It is concluded that safety net health care facilitates the development of unhealthy practices, such as delays in seeking care. The inadequacy of safety net health care is thus injurious to people's health.

Socioeconomic status and dissatisfaction with health care among chronically ill African Americans.

Addressing differences in social class is critical to an examination of racial disparities in health care. Low socioeconomic status is an important determinant of access to health care. Results from a qualitative, in-depth interview study of 60 African Americans who had one or more chronic illnesses found that low-income respondents expressed much greater dissatisfaction with health care than did middle-income respondents. Low socioeconomic status has potentially deadly consequences for several reasons: its associations with other determinants of health status, its relationship to health insurance or the absence thereof, and the constraints on care at sites serving people who have low incomes.

Creating continuity through mutual assistance: intergenerational reciprocity in four ethnic groups.

OBJECTIVES: Our purpose is to examine how culture-specific conceptions of mutual assistance in four ethnic groups reflect the nature of social exchange and its role in creating continuity. METHODS: We conducted five in-depth interviews over a 5-year period with 270 respondents aged 50 and up (59 African Americans, 85 Latinos, 78 Filipino Americans, and 48 Cambodian Americans). We asked both open-ended and semistructured questions to determine how respondents viewed their role in mutual assistance in the family. RESULTS: Mutual assistance was a critical element in intergenerational relations in all four groups, as it represented continuity within the family and was a part of a broader cultural ethos of family relationships. There were differences between groups in overall approach to mutual assistance, the factors to which they assigned the greatest importance, and the degree of dissatisfaction expressed over family relationships. DISCUSSION: Social exchange can be viewed not only as a means by which those who are old maintain power but as a major vehicle for perpetuating continuity across the generations. When social exchange breaks down, elders suffer from loss of power as expressed through role loss. Elders must have a negotiable commodity to exchange as well as the flexibility to adjust to changes in the extended family. Maintaining continuity of the family in the face of disruptive threats poses a particular challenge for elders.

Cultural expressions of bodily awareness among chronically ill Filipino Americans.

PURPOSE: To describe Filipino Americans' cultural traditions surrounding bodily awareness, especially how the principle of balance informs their views, and the link to self-management of chronic illness. METHODS: This qualitative study used semistructured interviews with 85 Filipino Americans between the ages of 46 and 97 years. Volunteers were recruited from numerous health care sites in 1 geographic location in the United States. Respondents had 1 or more chronic illnesses. Taped and transcribed interviews were coded and evaluated for themes. RESULTS: The concept of balance was central to Filipino Americans' portrayal of bodily awareness of signs and symptoms related to chronic illnesses, as well as to actions they took to manage their chronic illnesses. Efforts were made to control chronic illnesses through a variety of self-care practices. Diet posed a particular challenge because of the symbolic importance of food in Filipino culture and its use in the maintenance of social relationships. CONCLUSIONS: The ways in which Filipino Americans combine attention to the body, values of balance and harmony, and emphasis on social well-being result in heightened attention to bodily processes. Filipino Americans' emphasis on bodily awareness suggests that this particular cultural strength can be used to enhance chronic illness management. Awareness of the cultural traditions of Filipino Americans can facilitate patient education about how to manage chronic illnesses.

Dying away from home: quandaries of migration for elders in two ethnic groups.

OBJECTIVES: The purpose was to examine how Cambodian Americans and Filipino Americans view their homeland in old age and how those views affect the contemplation of death, using a multifaceted theoretical framework that encompasses transnationality, place, ethnic identity, continuity, and cultural phenomenology. METHODS: Three in-depth interviews over a 1-year period were conducted with 126 respondents (48 Cambodian Americans and 78 Filipino Americans). Both open-ended and semistructured questions were asked to determine how respondents viewed their eventual deaths. RESULTS: Many Cambodian Americans and Filipino Americans expressed a desire to die in their homelands. Whether or not they desired to return to the homeland to die was mediated by the presence or absence of the extended family, memories of the homeland, and the availability of traditional ritual practices in the United States. DISCUSSION: The preoccupation of respondents with where to die apparently reflects the desire to create continuity in their lives. In their efforts to reconcile issues of continuity, cultural meanings surrounding memory, ritual, and the family were paramount and appeared to reflect a desire to bring closure to unresolved conflicts in their lifetime. This research, including its theoretical framework, has implications for using the concept of transnationality and related concepts in gerontological research.

Perception of aging and sense of well-being among Latino elderly.

This paper examines perception of aging and sense of well-being among Latino elderly. Data from in-depth interviews of 83 Latino elders show that perception of aging is influenced by the level and quality of social support, and fulfilled cultural expectations, and having strong faith in God. The above factors also seem to influence sense of emotional well-being despite physical functional capacity and chronic health conditions. The most reported concerns by all study participants are fear of loneliness and the prospect of living in nursing homes.