Article Highlight: Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results

Posted by neelymyers

This week on the blog we are highlighting a paper by M.A. Rubel, A. Werner-Lin, F. K. Barg, B. A. Bernhardt, titled Expert Knowledge Influences Decision-Making for Couples Receiving Positive Prenatal Chromosomal Microarray Testing Results. The authors completed phone interviews with women and their partners who had received positive prenatal microarray testing results. The authors then analyze the data using modified grounded theory, discussing the theme of cultural expert knowledge and the implications on research and practice of prenatal testing. They close by recommending a future assessment of informational needs before testing to aid both the patient and their partners.

The authors begin by describing the increase in the use of prenatal genetic testing by pregnant women. Potential methods of genetic testing include invasive, non-invasive, and integrated screening for various potential fetal anomalies or genetic conditions. Chromosomal microarray, also called prenatal microarray, is a prenatal test that is used to “detect copy-number variants not detectable by conventional cytogenetic” (Rubel et al, 2017, 383). These test are recommended by the American College of Obstetrics and Gynecology if an anomaly is found via ultrasound. Parents feel anxiety after receiving a result of variant of uncertain significance, which can affect their decision-making following the result.

Western biomedicine helps to inform the biomedical expert knowledge (BEK) that holds a privileged status. BEK has roots in cultural and social conditions that shape how the knowledge is interpreted. BEK is founded in the idea that “aspects of the patient’s body and its symptoms are variables that can be independently and objectively evaluated and treated” (384). However, the genome may also be interpreted through a standard outside of biomedical knowledge. These other frameworks of medical knowledge may be used to interpret the testing done to women.

For this study, the authors recruited subjects for the study from the distribution of a pamphlet to pregnant women who received results from microarray testing. These women could then choose to participate in a short online survey that asked for demographic information and the results of the microarray test. The women who completed the survey and indicated interest were then e-mailed with information about the interview portion of the study. In total, 152 female patients completed the survey and 27 women were interviewed. 12 of their male partners were then subsequently interviewed.

Those who received positive results with uncertain or variable outcomes underwent a “state of crisis” after their results (388). They attempted to find the information related to their situation; some clinicians even provided the patients such biomedical information through literature and leaflets. Some patients were reassured by entrusting the health care providers to also provide the knowledge. Yet some providers may not wish to take a directive position and provide such materials.

Most of the patients interviewed expressed frustration that there was not enough information or resource provided initially by their clinicians. Patients that sought out BEK often turned to the internet. Those who considered themselves educated found it easier to search the information they could find online, yet there was still a general frustration about the BEK that was provided. Because of this frustration, patients often turned to other sources of understanding. The authors also extensively other ways of knowing and understanding their test results. These include embodied knowledge, spiritual beliefs, social networks, and a family history. These other types of knowledge other than BEK allowed the patients to understand their test results on their own terms.

The authors propose the term “Cultural Expert Knowledge” or CEK to encompass the types of knowledge that patients gained from outside the biomedical paradigm. This non-expert knowledge was some patients only information source. This provides a contrasting source of information to BEK and helps patients to understand their test results on their own terms. The authors close with a discussion about the difficulties of quantifying CEK since it is based on individual conceptions and outside of the biomedical sphere. They acknowledge the limitations of the study and provide further areas for expansion of the research base.

SfAA 2017 Conference Feature Part 2: “Experiences and Identity in Long-term and Chronic Illnesses”

Posted by sonya.petrakovitz

This week on the blog we are continuing our feature of a paper session from the 2017 Society for Applied Anthropology (SfAA) Annual Meeting which took place in Santa Fe, New Mexico from March 28th through April 1st. This session was entitled “Experiences and Identity in Long-term and Chronic Illnesses” and featured Beth Moretzsky, Karen Dyer, Marlaine Gray, and Ellen Rubinstein (full program from the SfAA meeting available here). Here, we present a summary of Karen Dyer and Marlaine Gray’s presentations. Part one of this feature is available here.

Karen Dyer (VCU) – Examining Health and Illness after Treatment for Colorectal Cancer: Long-term Healthcare Needs and Quality of Life

From her research, Dyer discusses the attachments formed between people with a history of colorectal cancer and their oncology team, which stems from both a fear of recurrence of illness and an especially strong emotional bond forged through mutual experiencing of a life-threatening disease. Dyer also discusses the consequences of the ambiguity of cancer follow-up care. Questions frequently include, who is the best doctor to see? If multiple care providers are seen by people with a history of colorectal cancer, will tests will be duplicated or even missed? Which emerging symptoms are serious enough to warrant further investigation? This continuing surveillance of a “survivor’s” body encompasses many medical repercussions from the treatment of cancer and reality of recurrence risk, often transforming people into life-long patients.

Dyer interviewed 30 participants in Virginia who had a history of colorectal cancer and were at least five years post-treatment. As this category of people with a history of colorectal cancer increases, there is a growing number of individuals using, and in need of, follow-up care. Yet this need is contrasted against a shortage of oncologists and primary care providers who are able to treat this group of people. Dyer asks, how do we treat and provide adequate long-term care to people for years, possibly for the rest of their lives, in a way that is not going to compromise or strain the oncology clinics? What are the physical, social, and emotional needs of longer-term colorectal cancer “survivors,” and how does their cancer experience impact these needs?

Dyer explains that most participants with a history of colorectal cancer did see an oncology team regularly for a follow-up care. For this group, as with other groups with specific types of cancer histories, the five-year mark is a critical period where individuals get discharged from monitoring and care because the risk of recurrence is statistically very low. Yet from Dyer’s research, a large number of her participants were planning to continue to see their oncology team after they had passed the five-year mark. Most had no formal “survivorship” care plan, and in general, there was not an understanding of what future care would entail.

Many individuals with a history of colorectal cancer continue to see their oncology team because of the intense bond and emotional connection they have developed. Going through a serious life-threatening experience created an attachment and deep sense of friendship. Dyer discusses that the oncology team fills a role of social friendship and support during the cancer experience when many other relationships may change. For Dyer’s participants, the oncology team has seen them in their “worst moments” and guided them through this demanding treatment. This type of connection and support is difficult to abandon. One woman said, “I need my security blanket, and yeah, I guess that’s what Dr. L [her oncologist] is.” This sense of being cared for and understood will be greatly missed. Any kind of care planning needs to take that strength of bond and trust into account.

Ambiguity surrounding cancer follow-up care is also an important dimension of Dyer’s work. Many participants report difficulty several years post-treatment when symptoms or health problems manifest in uncertain ways. Participants report difficulties distinguishing between normal aging processes, potential non-cancer related problems such as diabetes, or potential cancer-related, or cancer treatment-related, effects. Dyer uses fatigue as an example. Many participants spoke about being considerably more fatigued than they usually were. While this fatigue could be part of a normal aging process, it could also signal a variety of diseases or indicate the arrival of a cancer recurrence. Ambiguous symptoms such as fatigue lead to a high stakes, complex decision-making process.

People experiencing these types of indistinct symptoms often express an uncertainty about who they should contact with questions and when. Participants frequently did not want to “bother” their oncologist or be perceived as overreacting. Self-diagnosis and self-assessments of the level of seriousness of these symptoms were often the responses.

Marlaine Gray (GHC) – Shouldn’t We Be Listening?: Using Twitter for Recruitment, Patient Engagement, and Data Collection in a Study about How Young Adults with End Stage Cancer Make Medical Decisions

Gray begins by discussing research methodological complications when researching young people with metastatic cancer who are geographically spread all across the United States. It can be difficult to find and access this understudied population. Gray also discusses the sensitive nature of the topic is often compounded by time constraints; asking a patient for an hour of their time as part of an interview is difficult when that individual may not have a lot of time left.

Using an already active Twitter community, Gray investigated how young adults with metastatic cancer made medical decisions and whether or not their care matched their ultimate goals. The research was called The Clare Project, named after and featuring a personal story of metastatic cancer. The intention was to understand what these patients wanted for their remaining life and quality of life and translate those goals back into the medical discourse in order to match up treatments. Most participants wanted more quality time with their family, yet they were often being advised to get surgeries. Gray explains this disjunction can be problematic since metastatic cancer patients may never return home from the hospital after these types of surgeries, or they be unable to recover completely and be unable to fully engage with their families again.

Twitter became a way to contact people who were already publically speaking about their cancer experiences. The population of young people online is very active in seeking treatment, finding other patients to connect with, and finding out what the treatments are like. While there are also blogs, threads like Reddit, Facebook groups and pages, and other online message boards, Twitter emerged as the most successful way of communicating with this population. People are online constantly to discuss their cancer experiences.

The metastatic cancer Twitter community uses hashtags such as #mayacc (metastatic adolescent and young adult cancer community), #hpm (hospice and palliative medicine), or #metsmonday, where people with metastatic cancer post about their experiences on Monday. After launching their call for recruitment on Twitter, the Clare Project (Twitter page available here) achieved 200% of their recruitment goal within 24 hours. By using established hashtags and following prominent community members, Gray was able to reach an extensive participant audience.

Adolescent and young adult cancer patients are already actively using social media, many joining Twitter after their diagnosis. Twitter becomes a means of social connection. Gray articulates people are using Twitter to discuss decisions they have to make surrounding their metastatic cancer treatments. Even though patients talk with their doctors and family members, they are using the Twitter support groups to find out what the treatment experiences are. It is these treatment narratives from fellow metastatic cancer sufferers which holds more decision-making weight. Some of these decisions are very high stakes and are based on their peer, rather than medical, advice.

Accessing the first-hand expertise of other patients is labeled as a different kind of expertise than they can get from the medical community. Additionally, for side effects, participants express that doctors can tell them what the treatment is, but their fellow patients will express what the treatment is like and how to manage it. This social support is crucial when participants often do not know anyone else with these types of cancer.

Gray also discusses a kind of “legacy activism,” where people would know they were terminal with few options in their own treatment, but they wanted to advocate for more research funding and attention to metastatic cancer. Social media became a way to engage in social activism. Even though people could not physically go to advocacy events, they could virtually participate from their bedrooms and still spread their message. Through Twitter, people can participate in research and campaigning who would otherwise be unable to do so.

From the Archive: “A Mother’s Heart is Weighed Down with Stones”

Posted by sonya.petrakovitz

In our “From the Archive” series, we highlight an article from a past issue of the journal. In this installment, we explore Sarah Horton’s “A Mother’s Heart is Weighed Down with Stones: A Phenomenological Approach to the Experience of Transnational Motherhood,” available here. This article was featured in Volume 33, Issue 1 (March 2009).

While there is still considerable confusion and uncertainty surrounding the current state of immigration in the United States and the international movements of people, our journal article authors have continually acknowledged the importance of focusing on the lived experience of individuals within these larger political contexts. In her article, Horton discusses transnational motherhood through the embodied distress of mothers and children, showing that their suffering cannot be examined separately. Through her analysis of the narratives of undocumented Salvadoran mothers living in the United States, Horton explains the pain of these mothers’ undocumented status is experienced within the intersubjective space of the family.

Horton begins by describing Elisabeta, a Salvadoran mother working in the United States while her young son and elderly mother remain in El Salvador. Elisabeta was part of Horton’s research at a Latino mental health clinic in a New England city. Since Elisabeta was unable to hold or touch her young son, Carmelo, she instead carried his photo with her wherever she went. Elisabeta described her life as divided, “I work here but my heart lives there.” This division of “here” and “there” in transnational motherhood is not uncommon for undocumented immigrants who left their children in their home countries.

As the postindustrial, technology-based economy has grown within the U.S., women are increasingly migrating alone to find work in the high-tech sector, reshaping the immigrant family and trans-nationalizing the meaning of motherhood. At the same time, the 1996 Illegal Immigration Reform and Immigrant Responsibility Act (IIRIRA) increased both border policing and militarization as well as deportation and family separation in border communities. This meant that mothers working in the U.S. have found it more difficult to be reunited with their children, fearful of the dangerous and expensive crossing for their undocumented children, and the inability of the women to return home to visit. Thus, while many women had originally imagined their separations would be only temporary, the transnational relationship between mother and children can last years.

Horton explains that even though family separation has long been a reality for immigrants, scholarship has often ignored this lived experience as an independent factor of stress and trauma. Further, mental health analyses are frequently positioned at the individual level, and neglect the larger context of how such familial changes and separations are experienced and endured in the inter-subjective space between parents and children. Elisabeta described the aching in her chest when she would speak to her son on the phone each weekend. Later, when her son became seriously ill, Elisabeta felt an acute sense of failure – as both a mother unable to care for her ill son, and as a provider unable to pay for the operation he needed. Elisabeta was often unable to sleep at night, surrounded by thoughts of Carmelo’s words and tears. Horton explains Elisabeta’s vivid narrative expressed her embodied distress of being a transnational mother and the relational nature of the family’s suffering.

Gloria, another immigrant from El Salvador, left to find better economic opportunities after a series of devastating earthquakes in her home town. Gloria decided to leave her birthplace after it had become a space of death and scarcity, and the small business she and her husband had established had been destroyed. “There wasn’t enough food to give the kids. There was no way for me to keep them alive. And so I came here,” she said. For Gloria, and other women Horton interviewed, traumatic events reshaped familiar places and people, and triggered their decisions to migrate. Further trauma of the women having to explain their departures to their children were overwhelming.

The paradox of parenthood for these mothers is often having to choose between either financially supporting their children from a distance or physically being their caretakers. Horton explains that these parents have a profound sense of moral failing, perceiving that their inability to serve as “proper parents” is compounded by the difficulties of succeeding economically. Horton argues that placing these issues of “choice” and “decision making” against the backdrop of limited agency and “illegality” in the U.S. causes the parents’ immobility and powerlessness to reverberate through the space of a family stretched across international borders.

Children left behind in El Salvador often shoulder adult burdens, attempting to either prevent their mothers’ departure or requesting to join their mothers on the dangerous journey to the U.S. According to Horton, when the realization of the uncertainty in their separation becomes overwhelming, children respond to what they perceive as their mothers’ withdrawal of love with their own form of withdrawal. “My daughter then told me she had erased me from her heart, and that she didn’t love me anymore,” Gloria recounted. “El corazon de madre es un monton de piedras.” (“A mother’s heart is weighed down with a mountain of stones.”) This “weighing-down” is the burden Gloria had assumed in suffering the anger of her children while she only wished to protect them from hunger. Horton explains Gloria’s narrative demonstrates that suffering is relational, experienced through social connections and threats of uncertain future relationships. Horton says this transnational separation strains the bond between mother and child, as their distance is experienced both physically and emotionally.

Horton discusses strategies these transnational mothers undertake in order to attempt to substitute their parental presence. One strategy of sending gifts and luxury items, such as a color T.V. or special toys, is a way of feeling as if they are giving their children love and support. Yet this happiness from the fulfillment of financial support is temporary, and quickly overshadowed with sadness as children will often ask when they will be reunited again. Both the mothers and children know the gifts are double-edged, symbolizing the mothers’ love yet justifying their absence.

Horton concludes by calling for researchers to bridge the gap between subjective experiences of families living with separation and objective analyses of structure “illegality” and immigration policies. In hoping for more phenomenological accounts of transnational family life, Horton shows how sociopolitical inequality shapes individual experience and produces patterns of social suffering. She also places transnational mothers’ distress within a larger framework of social conditions that reproduce powerlessness and disadvantage. The sophistication of phenomenological approaches illustrates the ways that undocumented immigrants may experience embodied stress of strained family ties.