COVID-19 has had an outsized impact on Latinx communities in the United States, turning thousands of individuals into newly bereaved survivors. Despite an eagerness among scholars to document social inequities in COVID-19, data limitations prevent a deeper understanding of the socioeconomic context of COVID-19 death. This study explores the social relationships, economic factors, and emotional experiences that surround COVID-19 deaths among the members of Spanish-speaking Latinx communities in the United States, as retold in user-written posts on the GoFundMe crowdfunding platform. GoFundMe posts for funeral and related expenses in the aftermath of a COVID-19 death are an unexplored source of information about the impacts of COVID-19 mortality inequities on the health and well-being of bereaved individuals. First, we used computational query methods to systematically identify a sample of Spanish-language/bilingual GoFundMe posts from U.S. locations referencing the death of someone due to COVID-19. After excluding posts that did not meet search criteria, we used deductive and inductive coding to analyze a corpus of selected posts (n = 68). We found that a more complete story about the social context of COVID-19 deaths in Latinx and Spanish-speaking communities includes a focus on family roles and responsibilities, compounded financial hardship, risk of complicated grief, religiosity, and unexpected death. Our exploratory study highlights the need for further research into the contextualized health and well-being impacts of COVID-19 bereavement for structurally marginalized communities.
Introduction
The COVID-19 pandemic has had an outsized impact on Latinx communities in the United States, turning thousands of individuals into newly bereaved survivors [1, 2, 3]. Latinx individuals living in the United States were more likely to contract SARS-CoV-2 and to face disproportionately high mortality rates due to COVID-19 than non-Latinx white individuals [2, 4]. Despite evidence suggesting that the COVID-19 burden was particularly high among low-wage Latinx immigrants [3] and residents of communities with a greater proportion of Spanish speakers [5], little is known about the implications of COVID-19 deaths for the health and well-being of bereaved individuals in Latinx communities.
As COVID-19 mortality continues, researchers have predicted increases in forms of mental distress stemming from COVID-19 bereavement [6]. Indeed, complicated grief, a severe response to loss that persists beyond the acute period of grief and impairs function [7], and post-traumatic stress disorder have been found at elevated rates among individuals bereaved due to COVID-19 [6, 8, 9, 10, 11]. For many, the pandemic has also resulted in compounded loss, the term Scheinfeld and colleagues use to describe multiple simultaneous losses during the pandemic [12]. There is the direct experience of losing a loved one, but also additional losses through disruption to mourning practices, loss of social support, loss of income, and in some cases functional losses due to Long Covid symptoms [13, 14, 15]. We hypothesize that this compounded loss is exacerbated among many pandemic-bereaved Latinx individuals due to their structural marginalization [12], which may, in turn, increase their risk of physical and mental health declines going forward [13].
To understand the risks and resources for the health and well-being of pandemic-bereaved individuals and families, particularly those in structurally marginalized positions, it is important to shed light on the socioeconomic context of COVID-19 deaths. Here, we use the term socioeconomic context to encompass the social conditions, socioeconomic resources, and socioeconomic vulnerabilities that preceded and immediately followed COVID-19 deaths. Our capacious view of socioeconomic context includes social relationships, social support, structural marginalization, economic hardships, language, culture, and other social factors likely associated with the risk of COVID-19 mortality as well as the circumstances of each COVID-19 death. Prepandemic evidence suggests that these immediate circumstances surrounding a death are highly consequential for the longer term health and well-being of the bereaved [16]. Social and financial strain in the early stages of bereavement can inhibit healthy processing of grief and leave bereaved individuals with lingering health consequences [17, 18].
Latinx communities in the United States hold a strong sense of family, unity, and belonging that a large literature suggests is a health-protective asset [19, 20, 21]. Strong social support is hypothesized to contribute to well-documented Latinx health advantages in non-COVID mortality and other health outcomes [22]. However, it may be these same social assets that have exacerbated the vulnerability of Latinx communities in the United States to pandemic bereavement and to the risk of complicated grief disorder and associated health declines. Having a large social network or high-occupancy household may increase the likelihood that a person will know someone who died of COVID-19 [5, 15]. Further, due to the age patterning of COVID-19 deaths, living in a multigenerational household may increase the likelihood that a child or working-age adult experienced pandemic bereavement [23]. Another factor that may exacerbate vulnerability to pandemic bereavement and compounded loss is the language-based exclusion faced by monolingual Spanish speakers. Limited English proficiency is associated with reduced health care access, reduced preventive services, nonadherence to medication, barriers to evidence-based health information, and lack of receipt of safety-net benefits [24]. In addition to these direct consequences, language barriers often co-occur with other structural disadvantages, such as undocumented legal status [25]. However, few COVID-19 studies to date distinguish Spanish-speaking Latinx individuals in the United States from other Latinx individuals, which limits understanding of their experiences of pandemic bereavement.
In addition to strong social networks and language-based barriers, other factors stemming from structural marginalization may have put the members of Latinx communities at greater risk of bereavement and compounded loss during the pandemic. Immigration status, housing instability, low-wage labor, lack of health insurance, lack of other social benefits, and discriminatory policing are among the many racialized structural factors that disadvantage Latinx individuals relative to non-Latinx white individuals in the United States [26, 27]. Indeed, the financial and immigration-related hardships impacting Latinx communities may have become even more salient during the pandemic as noncitizens were excluded from emergency economic relief from the CARES Act and threatened with inadmissibility due to public charge [28, 29]. A large literature demonstrates that financial hardship is intricately linked to health and well-being in the United States [30, 31]. Literature from the pandemic suggests that the financial hardship-health association may be especially strong for individuals facing pandemic bereavement due to the ways that financial hardship contributes to compounded loss and creates barriers to healing and recovery [12, 17, 32]. Even as there is growing concern about the well-being of COVID-19 bereaved individuals facing financial hardships [17, 33], details on the socioeconomic context of COVID-19 deaths from the perspective of the family and friends of COVID-19 decedents are missing from much of the literature on COVID-19 bereavement.
Information about the socioeconomic context of death and bereavement is generally not collected in surveillance data or death certificates and has been primarily limited to journalistic accounts during the COVID-19 pandemic (e.g., study by Treglia et al. [34]). While surveys and qualitative interviews can provide valuable measures of the impacts of COVID-19 bereavement on health and well-being, the process of launching a survey or interview study, collecting data, and sharing it takes time and resources. In contrast, internet platforms such as GoFundMe provide a novel source of information about the pandemic that is available in real time and can be used to reveal details about the context that precedes and immediately follows a COVID-19 death. GoFundMe is a crowdfunding platform that many people have used to seek direct financial assistance after experiencing the death of a loved one during the pandemic. Mindful of the structural disadvantages and exclusion from economic relief faced by many Latinx immigrants in the United States, we selected GoFundMe as our data source because of its utilization by individuals experiencing the double burden of financial hardship and pandemic bereavement. Additionally, the GoFundMe platform may reach population subgroups that would not necessarily be included in survey samples, such as Spanish-speaking individuals and migrant workers. Using GoFundMe for qualitative research is not without limitations, but it can be especially useful for quickly generating research insights on the social context of a major event or disaster in its immediate aftermath.
The current study is concerned with how Spanish-speaking and Latinx individuals in the United States have experienced the immediate aftermath of losing a loved one to COVID-19, including the socioeconomic circumstances that may increase the risk of lasting consequences for health and well-being. Our qualitative analysis of pandemic crowdfunding posts aims to reveal insights into the lives of COVID-19 decedents and their connections to others as a first step toward understanding the effects of the loss faced by the Latinx community since the start of the pandemic.
Materials and methods
In this study, we asked what a qualitative analysis of Spanish-language GoFundMe posts related to COVID-19 deaths reveals about the socioeconomic context of COVID-19 death and bereavement. Informed by previous studies of crowdfunding data [35, 36], our study used a combination of keyword search and qualitative coding to identify and analyze data from the crowdfunding campaign website GoFundMe. GoFundMe is a crowdfunding platform that became used by many structurally marginalized individuals and families during the pandemic to fund pandemic-related expenses, such as funeral expenses after a COVID-19 death. We chose this platform because posts contain a combination of retrospective and in-the-moment narratives about individuals who died of COVID-19 and their impacted loved ones, which is not available through surveillance data or other sources. A key goal of this study was to provide a proof-of-concept example of how GoFundMe posts can be used to study the socioeconomic context of crisis events like the COVID-19 pandemic in close to real time. This real-time information, although not adequate for causal analysis, can still provide actionable insights into the risk factors for financial hardship, the risk factors for complicated grief, and the acute needs in specific population subgroups, which can be used by governments and community-based organizations to target support services. Thus, instead of using highly technical web-scraping methods to collect our data as some studies have done [37], we chose to use the search tool contained within the GoFundMe website, so that our approach is easily replicated by others, including individuals outside of academic research settings. Our use of a novel data source also carries new ethical questions as the data exist in the public domain but were not shared for research purposes. We followed guidance from Zook and colleagues regarding how to conduct responsible big data research, including doing our best to guard against the reidentification of individuals, practicing limited data sharing, debating ethical concerns as a team, and designing our methods for auditability [38].
Our search strategy consisted of two steps. First, we used the GoFundMe search tool to collect all posts returned by the following keyword strings: [“2020” & “gracias” & “funeral” & “coronavirus”]; [“2020” & “gracias” & “funeral” & “COVID”]; [“2021” & “gracias” & “funeral” & “coronavirus”]; and [“2021” & “gracias” & “funeral” & “COVID”]. We used the Spanish word for thank you, “gracias,” strategically to identify Spanish-language and bilingual posts. Because all posts on GoFundMe are requesting financial contributions, even posts with very few words generally include a mention of thanks. Similarly, the word “funeral” (which is spelled the same in Spanish and English) is a cognate that we used to identify posts related to funeral expenses or bereavement. We combined “gracias” and “funeral” with two variations on an identifier for COVID-19-related deaths: “COVID” or “coronavirus,” as these were the two most common identifiers we saw being used in Spanish-language social media. To this, we added a final search term to capture the year of the post: “2020” or “2021.” We used the four resulting search strings to return a selection of hundreds of posts likely to be fully or partially in Spanish and likely to refer to COVID-19 deaths in 2020 or 2021. Second, two team members manually reviewed search results to exclude posts that did not meet the study inclusion criteria. We restricted our analytic sample to posts published in 2020 and 2021, posts written in Spanish (monolingual) or Spanish and English (bilingual), posts from U.S. locations, and posts for which the triggering event was a death due to COVID-19 disease. These inclusion criteria were set to best identify posts with information about the social context of COVID-19 deaths among Spanish-speaking members of Latinx communities in the United States and about the experiences of bereaved family or friends in the immediate aftermath of the death. After excluding posts that did not meet inclusion criteria, we found it necessary to further restrict our analytic sample to a reasonable number of posts for qualitative coding. Our final analytic sample included 25% of relevant posts (n = 68 posts), a random 34 posts from 2020, and a random 34 posts from 2021. Posts in the analytic sample were stored in static format for analysis to ensure that the data would not be lost in case of the campaign being deleted from the website. While we did not exclude post photos from the coder view, we only formally coded post text and we did not analyze post comments.
We analyzed the text of the sample posts using team-based qualitative coding methods with Atlas.ti web software. Following an abductive analytic approach as outlined in Tavory and Timmermans [39], we used a combination of deductive and inductive coding to analyze the sample. We collaboratively developed a list of deductive codes for terms and phrases that would identify key descriptive variables of the focal decedent (age, gender, and age at death) and identify social conditions, resources, and vulnerabilities of the decedent (occupation, housing, family roles, and decedent had young children [<25 years]). Because posts did not follow a consistent format, many posts had unknown values for these descriptive variables. Still, deductive codes helped identify commonalities in contextual factors across posts. For example, a mention of hospitalization was assigned the code “hospital,” and a reference to financial struggle with funeral expenses or the loss of a breadwinner was assigned the code of “financial hardship.”
After deductive coding, we collectively generated a list of inductive codes to capture conceptual and thematic patterns across the posts. Following best practices for team-based coding, we discussed example quotes to clarify the boundaries of each inductive code until team members shared a clear understanding of how each code should be applied [40]. Together, our deductive and inductive codes explored references to structural positionality (e.g., occupation, nativity, financial burdens), social network positionality (e.g., network members, household membership, breadwinner status), financial hardship, and grief as well as the framing used to honor deceased loved ones and sources of support. By evaluating the repetition of deductive and inductive codes across posts, our team identified major themes characterizing the socioeconomic context of pandemic loss. This study was approved on March 24, 2022, by the University of California, Santa Cruz Institutional Review Board, protocol number: HS-FY2022-278.
Results
As shown in Figure 1, our keyword search strategy yielded 445 results, of which 272 posts met our criteria for inclusion in the relevant posts sample. Search strings with the term “2020” returned two times more relevant posts than those with the term “2021.” We found more relevant posts referring to COVID-19 deaths among men than women. Our team then hand-coded 25% of the relevant posts. To ensure there was even coverage of 2020 and 2021, we selected a random 34 posts from the 2020 sample and a random 34 posts from the 2021 sample for hand-coding. Our final analytic sample included 68 posts, half of which were from 2020 and half of which were from 2021. Supplemental Table S1 provides a list of posts selected for the analytic corpus along with descriptive characteristics. Nearly half of the corpus posts were from locations in California (n = 29). Posts authors, when indicated, were almost always close relatives, including spouses, adult children, siblings, grandchildren, nieces/nephews, and even a parent. A few posts were authored by a friend on behalf of the bereaved family members. Most posts did not specify the age of the deceased explicitly; however, many implied that the death was premature. Among the corpus posts that did specify the age of the decedent, the average age at death of COVID-19 was 51.5 years. Less than half (40%; n = 26) of corpus posts explicitly mentioned a hospital stay. Surprisingly, few posts provided information about how crowdsourced funds would be used. Table 1 shows how posts included in the analytic sample were distributed by phase of the pandemic, region of the United States, and which family roles of the decedent were explicitly mentioned in the posts text. Over one third of posts correspond to the first “Winter Surge” of 2020–2021, and just over half of posts are from the West. We hand-coded post text in two rounds (deductive and inductive coding) and reviewed post photos for additional context. While the analytic codes we used were numerous overall, we found connections among them that led us to identify several major themes. The five major themes revealed through our analysis were: family roles and responsibilities; compounded financial hardship; risk of complicated grief; religiosity; and unexpected death (see Table 2).
. | Percentage of Posts (n = 68) . |
---|---|
Phase of the pandemic | |
March–June 2020 | 24% (16) |
July–October 2020 | 13% (9) |
November 2020–February 2021 | 37% (25) |
March–June 2021 | 7% (5) |
Jul–October 2020 | 15% (10) |
November 2020–December 2021 | 4% (3) |
Census region of the United States | |
West | 51% (35) |
Northeast | 9% (6) |
Midwest | 9% (6) |
South | 31% (21) |
Named family roles of decedent (each post can contribute to multiple family roles) | |
Husband | 19% (13) |
Wife | 6% (4) |
Father | 44% (30) |
Mother | 24% (16) |
Son | 9% (6) |
Daughter | 3% (2) |
Brother | 9% (6) |
Sister | 9% (6) |
Grandfather | 13% (9) |
Grandmother | 12% (8) |
Aunt/uncle | 12% (8) |
Friend | 4% (3) |
Other | 7% (5) |
. | Percentage of Posts (n = 68) . |
---|---|
Phase of the pandemic | |
March–June 2020 | 24% (16) |
July–October 2020 | 13% (9) |
November 2020–February 2021 | 37% (25) |
March–June 2021 | 7% (5) |
Jul–October 2020 | 15% (10) |
November 2020–December 2021 | 4% (3) |
Census region of the United States | |
West | 51% (35) |
Northeast | 9% (6) |
Midwest | 9% (6) |
South | 31% (21) |
Named family roles of decedent (each post can contribute to multiple family roles) | |
Husband | 19% (13) |
Wife | 6% (4) |
Father | 44% (30) |
Mother | 24% (16) |
Son | 9% (6) |
Daughter | 3% (2) |
Brother | 9% (6) |
Sister | 9% (6) |
Grandfather | 13% (9) |
Grandmother | 12% (8) |
Aunt/uncle | 12% (8) |
Friend | 4% (3) |
Other | 7% (5) |
Note. Phases of the pandemic and census region of the United States have mutually exclusive categories, but each post can contribute to multiple named family roles of decedent categories.
Family Roles and Responsibilities . | Compounded Financial Hardship . | Risk of Complicated Grief . | Religiosity . | Unexpected Death . |
---|---|---|---|---|
“[Name] was such an Amazing Soul, a wonderful husband, father, grandfather, brother, uncle and friend who touched the lives of many. No matter when or where he was, he made a great impact to those he came in contact with.”—November 2020 | “During this COVID-19 pandemic, it has left a lot of people without jobs and with this unfortunate event it has created strain economically for our family. This unprecedented times we are asking for some help for the funeral costs.”—May 2020 | “We never got to say goodbye. We never got to hold her hand. We never got to say I love you one last time.”—April 2020 | “We prayed that this day would never come, but, God, has other plans. My uncle is now reunited with his sons and rests in the everlasting glory of our Heavenly Father”—January 2021 | “Our family was not prepared to let her go—not emotionally, nor financially. Now, she leaves behind two children [Name] and [Name], 17 and 16 years old. Children who never in their lives could have imagined losing their mother of only 54 years of age—who was so full of life.”—April 2020 |
“Not only was she a mother to her 6 children but helped raise her 5 brothers and 4 sisters. A second mother to many. A person who would welcome anyone with open arms. Who would put everyone’s needs before her own. The backbone of our family. She leaves a huge impact in many lives.”—December 2020 | “My father was the main source of income for my family, I’m currently not financially stable enough to provide for my family and give my father a proper goodbye. Any donations would be of great help and very appreciated.”—February 2021 | “She is heartbroken and devastated there’s no words to explain how she’s feeling right now.”—January 2021 | “We prayed for my Dad’s salvation to be free from all sickness and pain. We believe GOD heard our prayers and did just THAT. He is now rejoicing in the presence of our Lord and Savior, Jesus”—February 2021 | “My mother suddenly passed away after losing her battle with coronavirus on May [date] 2020. The unexpected and untimely death of my mom was not something my family was prepared for in the midst of a countrywide quarantine due to Covid-19.”—May 2020 |
Family Roles and Responsibilities . | Compounded Financial Hardship . | Risk of Complicated Grief . | Religiosity . | Unexpected Death . |
---|---|---|---|---|
“[Name] was such an Amazing Soul, a wonderful husband, father, grandfather, brother, uncle and friend who touched the lives of many. No matter when or where he was, he made a great impact to those he came in contact with.”—November 2020 | “During this COVID-19 pandemic, it has left a lot of people without jobs and with this unfortunate event it has created strain economically for our family. This unprecedented times we are asking for some help for the funeral costs.”—May 2020 | “We never got to say goodbye. We never got to hold her hand. We never got to say I love you one last time.”—April 2020 | “We prayed that this day would never come, but, God, has other plans. My uncle is now reunited with his sons and rests in the everlasting glory of our Heavenly Father”—January 2021 | “Our family was not prepared to let her go—not emotionally, nor financially. Now, she leaves behind two children [Name] and [Name], 17 and 16 years old. Children who never in their lives could have imagined losing their mother of only 54 years of age—who was so full of life.”—April 2020 |
“Not only was she a mother to her 6 children but helped raise her 5 brothers and 4 sisters. A second mother to many. A person who would welcome anyone with open arms. Who would put everyone’s needs before her own. The backbone of our family. She leaves a huge impact in many lives.”—December 2020 | “My father was the main source of income for my family, I’m currently not financially stable enough to provide for my family and give my father a proper goodbye. Any donations would be of great help and very appreciated.”—February 2021 | “She is heartbroken and devastated there’s no words to explain how she’s feeling right now.”—January 2021 | “We prayed for my Dad’s salvation to be free from all sickness and pain. We believe GOD heard our prayers and did just THAT. He is now rejoicing in the presence of our Lord and Savior, Jesus”—February 2021 | “My mother suddenly passed away after losing her battle with coronavirus on May [date] 2020. The unexpected and untimely death of my mom was not something my family was prepared for in the midst of a countrywide quarantine due to Covid-19.”—May 2020 |
Family roles and responsibilities
Family roles and responsibilities emerged as a prominent pattern across posts and included references to the social contributions of the decedent, their family/social relationships, and familismo (the prioritization of family in the Latino community) values held by the decedent. The decedents were described as holding multiple distinct family and community roles at once: “…a mother to her 6 children but helped raise her 5 brothers and 4 sisters. A second mother to many.” As shown in Table 1, male family roles (i.e., father) were mentioned more frequently than female family roles (i.e., mother). Decedents were also described in many positive ways relating to their responsibilities to family and community. For example, “Despite his many struggles, he would always make sure that his family came first.” Much of the praise shared in the posts to honor the deceased included reference to hard work and social contributions, giving an impression of capability, productivity, and comfort being depended on by others. For example, “He was such a hard worker and worked all hours of the day to help provide for his family.” Reference to a dedicated work ethic was present in many posts, as many of the deceased had a provider role in their family. Furthermore, many of the posts elaborate on the social contributions of the decedent, emphasizing the many family members and friends who actively depended on the decedent for support up until their death. Relatedly, posts reflected on what the decedent meant to their community and on their life’s impacts often by sharing the stories of migration from locations in Mexico or other parts of Latin America. Descriptions of sacrifice for others through migration and work were common across the posts. We also created an analytic code, “orphaned children,” and used it to note several instances of minors who had lost a parental figure due to COVID-19. For example: “She left behind two beautiful girls and her newborn baby boy.” There was an emphasis on young children and family members bereaved by the pandemic.
Compounded financial hardship
Our use of crowdfunding data meant that financial hardships were likely to be a major factor in our analysis because we drew on a sample of posts from individuals seeking financial assistance from others. However, we aimed to characterize the specific descriptions of socioeconomic context that appeared across posts. We found a pattern of layered financial hardship preceding and immediately following the COVID-19 death event that is consistent with Scheinfeld and colleague’s concept of compounded loss [12]. We refer to this theme as compounded financial hardship to capture the ways that COVID-19 bereavement exacerbates the difficulties of financial hardship. The following quote exemplifies the theme of compounded financial hardship:
“His daughter, his son, and his wife are in dire need of financial assistance to pay for medical costs, funeral costs, and to support their future given that their father was the sole breadwinner for their household.”
While GoFundMe posts are intended to motivate financial donations to specific causes, the posts we analyzed reveal a common circumstance of prepandemic financial insecurity being exacerbated by the new expenses induced by a COVID-19 death. The timing of posts also highlights how quickly this compounded financial hardship became a worry for bereaved family members. Most GoFundMe posts analyzed were published within 1 day of the focal COVID-19 death. Others were even published on the same day. When the date of death was reported, the range of publication dates in the analytic sample was from 0 to 3 days after the reported death. The short time window from death to postpublication conveys an urgency of the need for financial assistance during the pandemic and the co-occurrence of financial worry with the grieving process for families with financial hardship.
Risk of complicated grief
Sharing about hardship is common to the crowdfunding post format; however, the posts in our sample went further to articulate experiences likely to increase the risk of complicated grief. Most posts mentioned at least one specific negative emotion or experience due to the death of their loved one to COVID-19. Words such as “tragic,” “heavy loss,” “heartbroken,” and “devastating” appeared in many posts to describe the pain felt by those close to the decedent. Describing a bereaved family member, one post stated, “She is heartbroken and devastated there’s no words to explain how she’s feeling right now.” Some posts even mentioned the hospitalization or loss of more than one family member in a short period of time: “In less than a month our family has lost 3 family members to this terrible virus and the pain is completely unbearable.” Many posts described not being able to visit their loved one or say goodbye before their death. For example, here are quotes from three separate posts:
“We never got to say goodbye. We never got to hold her hand. We never got to say I love you one last time.”
“It was hard for them not being able to be by her side holding her hand, comforting her, telling her they love her and she could get through this …”
“…ending it this way is an especially difficult hardship for her family, with all of the restrictions in place preventing the family from surrounding [Name] with loved ones during her last moments.”
All posts that explicitly mention restricted visitation came from 2020. Although our sample used “funeral” as a key term, few posts specified funeral details, so it is unclear how much the comments about pandemic-era restrictions also had consequences for funeral rituals and family gatherings.
Religiosity
The majority of posts included at least one religious reference in their text. This appeared most often in the form of small phrases such as, “God bless you,” or requests for prayers for the families affected by the loss. Other religious references described the deceased as finally reaching peace or having moved on to a better place, stating, for example, “But God had other plans & needed a new Angel to be with him in Heaven & now she’s Resting In Peace” or, as in another post, “I have faith in God that she is with him and has moved on to better life” or, as in another, “Now that she is at home with our Celestial Father, we celebrate that she is no longer suffering.” In this way, religiosity was used to frame deaths in a positive light or as consistent with the will of a higher power. However, in suggesting that their deceased loved one was now in a better place, a few post authors also expressed a sense of being left behind. In addition to their fundraising purpose, many posts requested prayers for the deceased and/or the bereaved family: “Please keep our beloved [name] and his family in your thoughts and prayers.” The invitation of prayers and the offering of prayers in post comments demonstrated the potential for connection through shared religiosity.
Unexpected death
A final theme that was highly prominent across the corpus of posts was that of unexpected death. Adjectives used by post authors described a lack of preparedness for the loss, both emotionally and financially, and cited the premature or sudden nature of the death. We observed the unexpected nature of the deaths described in ways that emphasized either the suddenness of the death, or the prematureness of the death, or both. For instance, some of the posts coded for unexpected death emphasized that the decedent died during their prime of life or prematurely, using phrases such as, “taken too soon,” “she died at only 50 years young,” or “he was only 53 years old.” Other posts included words to express the sudden and surprising nature of the death. For example:
“The unexpected and untimely death of my mom was not something my family was prepared to for in the midst of a countrywide quarantine due to Covid-19.”
“This has taken us completely by surprise.”
Among those posts expressing the suddenness of the death, there was often explicit mention of the financial consequences of the sudden loss. For example, “financially his family was not prepared for costly burial expenses.” Other posts connected the unexpected financial burden to its implications for the bereavement process: “I’m currently not financially stable to provide for my family and give my father a proper goodbye.”
Discussion
By highlighting major themes appearing across crowdfunding posts by COVID-bereaved individuals in the Spanish-speaking Latinx community in the United States, this exploratory study highlights the need for further research into the socioeconomic and mental health impacts of COVID-19 mortality for bereaved relatives. The findings situate COVID-19 deaths as occurring within relationships, family roles, and community. Especially as public health leaders issue warnings about the mental health consequences of the pandemic and the increased risk of complicated grief disorder among bereaved individuals [11, 41, 42, 43], there is a need to quickly identify vulnerable individuals in order to prevent the progression to mental illness or other health problems. For example, President Biden’s National Strategy for the COVID-19 Response and Pandemic Preparedness calls for better data infrastructure to help identify high-risk communities, so that increased support and resources can be offered to those communities. Our results contribute to efforts to tell a more complete story about what the global pandemic means for the health and well-being of bereaved members of Latinx communities in the United States. Moreover, the study’s use of crowdfunding posts as a novel data source that can be monitored and analyzed without time lags provides a model for use by other researchers and practitioners interested in monitoring pandemic bereavement in real time. In the following sections, we reflect on the significance of the five themes that emerged from our qualitative analysis.
First, the family roles and responsibilities theme appeared most frequently across the sample, reflecting the importance of the family role in framing the lives of individuals lost to COVID-19. Here, we saw that what is generally conceptualized as an asset for health and well-being—having a strong social network and deep relationships with others [44, 45, 46]—may have been a factor that put individuals at greater risk of death during the pandemic or which contributed to pandemic bereavement. This is consistent with recent findings from a national survey of older adults, which found that distributed networks and relying on external resources were associated with COVID-19 infection [22].
Second, the combination of bereavement and financial hardships discussed in our sample reflects compounded financial hardship. Others have described financial hardships the Latinx community has experienced during the pandemic as well as prior to the pandemic, such as difficulty paying rent, highlighting that these reflect structural disadvantages stemming from the intersection of racism, classism, and immigrant exclusion [4, 32, 47, 48]. Our results were consistent with this prior work, highlighting the likelihood that COVID-19 bereavement and the health and well-being of hard-hit communities may vary based on prepandemic inequities and financial hardships [49]. We found the examples of baseline financial hardship being compounded by high levels of stress around the loss of a breadwinner, which conjoined with acute bereavement. Decedents were frequently described as the financial pillars of their households and families were not financially prepared for their deaths.
This leads to the third theme, which is that barriers to healthy bereavement made it difficult for individuals to mourn their losses, putting them at increased risk of complicated grief. Families that lost a loved one to COVID-19, especially those who were bereaved in 2020 during lockdown orders and restrictions on social gatherings, had fewer options to process their loss [50]. Hospital visits and funerals were restricted for many 2020 deaths, disrupting normal bereavement experiences and rituals. Further, when bereavement is compounded by financial hardship, insufficient resources and time may take away an individual’s options for grieving [51]. Lack of closure surrounding a death contributes to a heightened risk of complicated grief disorders [52, 53]. Similarly, when grief is denied social recognition, it may progress to complicated grief disorders, which have lasting negative consequences for health and well-being [8, 9, 50, 54]. Thus, the expressions of incomplete mourning we observed in the immediate aftermath of COVID-19 deaths indicate the risk of complicated grief, which, in turn, may have lasting negative impacts on health and well-being [17, 55]. The risk of complicated grief may be amplified for communities, in which many people experienced multiple losses. At the same time, prepandemic sources of resilience, such as dense family networks, may buffer the risks of negative mental health consequences from pandemic bereavement [56].
A fourth and prominent theme was that of religiosity. We identified the examples of religion being used as a community-building tool for dealing with the loss of a loved one by inviting prayers and connecting around shared beliefs. The religious aspects of posts also portrayed narratives about the meaning of deaths due to the COVID-19 pandemic. Many people expressed the religious belief that the deceased is in a better place, sometimes describing a divine plan, which facilitated framing the death in a positive or natural light. Overall, religiosity appeared to be a source of strength and acceptance for many pandemic-bereaved individuals in our sample and may be protective for healthy bereavement and mental health. Indeed, there is a large literature showing the benefits of spirituality and religious participation for processing grief in healthy ways [57, 58, 59]. Our results suggest that religiosity will play an important role in the health and well-being of Latinx communities healing from COVID-19 losses.
The final theme, unexpected death, was almost universally expressed by bereaved post authors. On the one hand, this was not surprising, considering the sudden and unfamiliar nature of the COVID-19 pandemic and the fact that the average death due to COVID-19 occurs just three weeks after infection [60]. On the other hand, we noted that the unexpectedness expressed by bereaved family members stemmed not just from the suddenness of deaths but also from their prematureness. Posts painted a picture of decedents as having died in their prime of life, using adjectives to emphasize strength, vivaciousness, capability, work ethic, and even youthfulness and potential. This finding is a stark contrast to the common narrative throughout the pandemic that the individuals of the oldest age cohort were the most affected by the virus [26]. Of course, the risk of death from COVID-19 increases exponentially with age, but the impact of COVID-19 losses on bereaved relatives may not follow the same age pattern. When COVID-19 deaths are also both premature and unexpected, the impact on bereaved relatives may be more traumatic [61].
Our analysis was restricted to what was explicitly stated in the text of GoFundMe posts. Thus, we were limited in what we could infer about the socioeconomic context of COVID-19 deaths and the experiences of bereaved individuals. Still, our findings go beyond what could be learned from COVID-19 surveillance data or death certificates. In painting a picture of the immediate-term context of pandemic loss, we identified strong family networks and religiosity as possible sources of resilience. At the same time, our results raise concern that when bereavement is compounded by financial hardship, individuals may be at greater risk of complicated grief and yet unable to afford the mental health care they need [62].
Limitations
Our results should be interpreted in light of several limitations. First, our query strategy used a finite keyword approach. We acknowledge that there were likely additional posts that used an alternative word to refer to the pandemic, such as “la pandemia” or “el virus,” or which did not mention COVID-19, but which were still due to COVID-19. These would not have been captured in our analytic sample. Second, due this study’s reliance on GoFundMe posts, our analysis was restricted to the information explicitly shared by post authors regarding the circumstances surrounding each and the experience of bereavement of those close to the deceased. Available details varied across posts, such that several key factors we were interested in observing, such as whether a death involved hospitalization, were not consistently mentioned. Finally, our study period is limited to the first two years of the pandemic and does not extend beyond December 2021. COVID-19 bereavement may have impacted communities in distinct ways as the pandemic progressed.
Conclusion
We find that a more complete story about the socioeconomic context of COVID-19 deaths in Spanish-speaking and Latinx communities includes a focus on family roles, compounded financial hardship, risk of complicated grief, religiosity, and unexpected death. These insights have implications for health and well-being in the long term and they merit urgent attention through future research as well as through targeted community investments. Our results should also be considered a call to address the policy-related determinants of premature COVID-19 mortality in Spanish-speaking and Latinx communities in the United States, as well as policies that exclude non-citizen immigrants from receiving COVID-19 funeral assistance through the Federal Emergency Management Agency [63]. The acute pandemic crisis may seem to have been resolved, but the crisis of pandemic bereavement continues and the financial, social, and health impacts of pandemic bereavement continue to be felt by families and communities.
Data accessibility statement
All data analyzed was publicly available on the gofundme.com website as of May 2022. PDFs of the posts included in the analysis can be shared upon request.
Supplemental files
The supplemental files for this article can be found as follows:
Table S1. List of GoFundMe Posts Included in Analytic Sample with Key Characteristics
Funding
This research was supported by two Building Belonging Fellowships from the Institute for Social Transformation at the University of California, Santa Cruz.
Competing interests
None.
Author contributions
ARR conceptualized the study. Undergraduate trainees, EA and RHC collected the data, carried out the analysis, drafted the manuscript, and assisted with revisions. ARR supervised the analysis and revised the manuscript.
References
How to cite this article: Amador E, Hernández-Chincoya R, Riley AR. Pandemic retelling: What GoFundMe posts reveal about the socioeconomic context of COVID-19 death and bereavement among Latinx and Spanish-speaking communities in the United States. Adv Glob Health. 2023;2(1). https://doi.org/10.1525/agh.2023.2048236
Editor-in-Chief: Craig R. Cohen, University of California San Francisco, CA, USA
Senior Editor: Andres G. Lescano, Cayetano University, Peru
Section: Improving Health and Well-Being