Designing Retrospective Measures on Childhood for Older African American Adults

Abstract

A growing body of research addresses the long-term implications of early-life circumstances for adult health and aging by drawing on retrospective reports on childhood. There has been little scholarly discourse on considerations for the design of such questions for members of racial/ethnic minority groups specifically. This article aims to encourage greater attention to this area by presenting insights from the process of designing a childhood history questionnaire within an ongoing study of cognition, health, and aging among older African American adults in greater Newark, New Jersey. The article presents on three overarching themes, including the importance of (a) adopting a resilience orientation with attention to protective factors, (b) being sensitive to concerns about questions on adverse childhood experiences, and (c) orienting to ethnoracially embedded cohort influences. The article concludes by describing the particular importance of cultural humility—with attention to intersectional social positions—among researchers who are engaged in studies on childhood with older adults from underrepresented racial/ethnic groups.

Keywords

life course ethnicity race health methodology cohort ethnogerontology

A growing body of research indicates sociocultural differences in how individuals interpret and respond to survey questions (Kemmelmeier, 2016). Not only can this response variability influence the methodological quality of survey data (for a discussion, see Johnson et al., 2006) but also might influence people’s overall experience of participation in research. Considerations of sociocultural influences on survey response are especially salient within studies on later life racial/ethnic health disparities, cross-cultural gerontology, and ethnogerontology, which deliberately seek to engage members of underrepresented racial/ethnic groups. Much of the discourse on strategies to promote positive relationships among researchers and research participants from underrepresented racial/ethnic groups has focused on issues concerning recruitment and informed consent (George, Duran, & Norris, 2014). Some scholars are orienting further attention to other aspects of the research process, such as the variety of ways in which researchers convey to participants that they “have designed and will conduct the research with an attitude of good will towards (participants)” (Kerasidou, 2017, p. 47).

This article considers issues of sociocultural considerations within the design of survey questions that elicit retrospective reports on childhood. Across numerous fields—including epidemiology, gerontology, human development, and medicine—there is growing interest in the long-term consequences of childhood for adult health and aging (e.g., Braverman & Barclay, 2009; Patrick, Carney, & Nehrkorn, 2017). Many studies in this area draw on retrospective reports of childhood gathered as part of larger surveys. Although researchers have called for cultural sensitivity when designing survey questions in general (Stewart & Nápoles-Springer, 2003), and clinicians have recognized the importance of considering cultural contexts when screening individuals for adverse childhood events (Thombs et al., 2007), there has been less discussion of sociocultural considerations within the design of questions about childhood within survey research on health and aging.

This article discusses an overview of considerations for designing questions on childhood within research studies that purposively aim to engage older adults from underrepresented racial/ethnic groups. It provides insights based on the author’s experience of developing a questionnaire on childhood for older African American adults in greater Newark, New Jersey. The article presents three specific ways in which sociocultural considerations emerged throughout the process of designing the questionnaire. It then discusses the relevance of the concept of cultural humility—with attention to intersectional social positions such as by culture, social structure, and historical time—when designing questions about childhood, especially for studies that deliberately seek to engage older adults from underrepresented racial/ethnic groups.

Study Context

The research study of focus is the Pathways to Healthy Aging in African Americans study at Rutgers University, Newark, which is an ongoing study to promote and understand brain health among midlife and older African American adults in greater Newark, New Jersey. Newark—located in the northeast region of the United States—is the largest city in New Jersey, with 53.2% of the population ages 65 years and over identifying as black or African American compared to 50.2% within the Newark population at large (U.S. Census Bureau, n.d.). A primary focus of the study is the potential cognitive health benefits of a fitness intervention targeted specifically to African American adults in middle and later life (Gluck, Shaw, & Hill, 2018). Accordingly, the study has extensive measures of participants’ neurocognitive functioning.

Beginning in 2018, the research team set out to create a childhood history interview as part of a new study module. Building from a growing literature on the implications of early life experiences for cognition in later life (Walhovd et al., 2016), this module was intended to examine the extent to which differences in childhood among participants are associated with neurocognitive performance and other aspects of health and well-being. The module involves inviting back participants to complete a face-to-face, hour-long interview with members of the research team. Participation in the module consists of responding to mostly close-ended survey items about one’s own family relationships, communities, and schooling before the age of 18.

The team’s general approach to designing the questionnaire was to incorporate items about childhood from prior studies’ life history modules, reasoning that this strategy would best position findings toward cumulative knowledge development. Early drafts of the questionnaire included measures from large U.S. population samples—including the Health and Retirement Survey (Health and Retirement Study, 2017) and the Wisconsin Longitudinal Study (Herd, Carr, & Roan, 2014)—as well as from regional studies of older African Americans (Aiken-Morgan, Gamaldo, Sims, Allaire, & Whitfield, 2014). Developing the questionnaire also involved receiving feedback from the study's community advisors, who are African American residents of greater Newark (which the university researchers for this module are not). The researchers met with approximately 12 community members to review early versions of the questionnaire as well as with several other university professionals who identified as members of the focal community and who had prior experience conducting research with older African American adults in greater Newark. The researchers also piloted the questionnaire with seven study participants. These processes generated insights into ways in which the questionnaire required explicit forethought for optimal research with older African Americans in Newark. I explain these insights according to three themes: (a) adopting a resilience orientation, (b) sensitivity to asking question on adverse childhood experiences (ACEs), and (c) recognizing ethnoracially embedded cohort influences.

Adopting a Resilience Orientation

Resilience refers, in part, to the potential for people to display high levels of functioning even when faced with considerable adversity and challenge (Masten, 2001). Theorizing on resilience emphasizes the role of protective factors, which are conditions that promote a system’s ability to adapt successfully under conditions of threats. Protective factors can exist at various levels of scale, including within a person, as well as across relationships, communities, and other social systems (Masten & Barnes, 2018). Many factors that serve as protective factors in the face of risk also can operate as developmental assets that promote healthy development regardless of exposure to risk factors (Benson, 2007).

Concerning the development of the childhood history questionnaire, the researchers and community advisors alike anticipated that many participants in this sample of older African Americans were likely to have faced considerable hardship as children on account of factors such as limited economic opportunities and structural racism. At the same time, several of the study’s community advisors commented that the initial version of the questionnaire did not include enough questions about protective factors from childhood. For example, regarding questions about parents’ education, advisors made the point that even if a participant’s parents had low levels of literacy and education, they still might have done everything possible to encourage their child to pursue additional schooling. In response, we added questions about the extent to which participants recall their parents and other prominent figures in their childhoods encouraging them to work hard and stay in school. As another example, regarding questions on childhood financial status, a community advisor stated that even if a participant’s family was extremely poor when growing up, many participants might have not felt poor as children if their circumstances were the only ones they knew at the time. In response, we revised our questioning about their family’s economic status in childhood, including an item about what they recall feeling as a child, as well as how they feel about their family's financial situation in childhood based on what they know now as an adult. As a final example, another advisor commented that even if a participant attended a racially segregated school, which prior studies generally have found to be a risk factor for poorer health outcomes in adulthood (Aiken-Morgan et al., 2014), perhaps some participants view this aspect of their childhood as an advantage—such as by having greater access to black teachers and mentors. In response, we added an open-ended question allowing participants to reflect on protective factors from childhood in their own words. Adding this question not only allows the researchers to explore perhaps overlooked sources of protective factors among older African Americans in the study population but also provide participants with greater opportunity to reflect on areas of strength and pride from their past as part of their experience of participating in the study.

Sensitivity to Asking Questions on Adverse Childhood Experiences (ACEs)

Much of the literature on childhood circumstances and adult health and aging has focused on the long-term consequences of ACEs. ACEs have been defined as “all types of abuse, neglect, and other potentially traumatic experiences that occur to people under the age of 18” (Centers for Disease Control and Prevention, 2019). Studies conducted across the world have found that greater exposure to ACEs in childhood is associated with a range of poorer health outcomes. For example, a meta-analysis of 37 studies found that exposure to four or more ACEs was associated with heightened risk for many types of health problems, including diabetes, cancer, mental illness, and problematic drug use (Hughes et al., 2017).

Recognizing this expansive literature, as well as emerging evidence that lifetime exposure to stress can jeopardize optimal neurophysiological functioning (Herzog & Schmahl, 2018), the research team considered including items on ACEs in the questionnaire. However, some study team members expressed trepidation about doing so. Would participants feel as if the study were getting too personal? Would asking such questions give participants bad feelings about participating in the research? Would it risk their future participation? These concerns were based, in part, in recognition of how some older African Americans might be especially mistrustful of the intentions of researchers in the context of historical abuses of power by research institutions (George et al., 2014).

After much discussion, the team decided to proceed with piloting the questionnaire without the inclusion of questions on ACEs. However, we soon realized in the course of conducting the pilot interviews that childhood hardships were on the minds of many participants, even if we did not directly ask about them. In between questions on residential histories and parent–child relationships, several participants disclosed childhood adversities such as the death of a sibling, parental incarceration, and physical and psychological abuse. It seemed that by not directly asking about these aspects of their childhoods, we were missing an opportunity to learn something important about their pasts, and we were potentially inadvertently stigmatizing these experiences by avoiding questions on these topics altogether.

As a result, we decided to include a series of questions about ACEs in the final version of the questionnaire. We included items to assess traditional ACEs—such as different types of family violence, household mental illness, household substance abuse, and parental separation/divorce (Felitti et al., 2019). We also included several additional items regarding other hardships—such as sibling death and parental unemployment—which have been included in other large population health studies (Friedman, Montez, Sheehan, Guenewald, & Seeman, 2015). We took additional precautions to ensure the sensitive administration of all of these items. Whereas research team members narrate all other questions in the face-to-face interview, the ACEs questions are delivered through self-administration during the interview session. This mode allows participants to disclose these experiences privately without having to state them out loud to the interviewer. We also ensured that participants are offered a response category of “prefer not to respond” for each of the hardship items to further communicate to participants that answering these questions is voluntary.

Recognizing Ethnoracially Embedded Cohort Influences

“Cohort” refers to a group of people who experience their own lifespan at similar points in historical time, such as people who experienced early childhood during the Great Depression (Elder & Johnson, 2003). The life course perspective’s attention to cohort effects has motivated social scientific study of ways in which historical context matters for health and developmental outcomes (e.g., Masters et al., 2014). At the same time, the perspective also orients attention to how cohort members differ in their life course experiences depending on other aspects of their social positions, such as by gender and race/ethnicity. In fact, contemporary scholars have called for the development of an explicitly intersectional life course perspective, which focuses on “exploring the links between structural inequalities and the lived experience of aging among racialized older people” (Ferrer, Grenier, Brotman, & Koehn, 2017, p. 10).

Considerations at the intersection of birth cohort and race/ethnicity emerged during the design of the childhood history questionnaire in two primary ways. First, study advisors indicated the importance of questions to explicitly assess each individual’s migration history given the birth cohort and race/ethnicity of this sample. Because study participants were born in the 1920s through the 1950s and currently reside in greater Newark, there was an expectation that many would have spent at least some of their childhoods in the South and moved northward during the Great Migration. (The Great Migration refers to African Americans moving from the South of the United States to urban areas in the North and West from the 1910s through the mid-1970s in search of better living conditions and economic opportunities; Tolany, 2003.) Differential life course exposure to geographically based risk factors in the South (e.g., poorer school quality stemming from racial segregation policies, dietary patterns, as well as greater rurality) might be especially important risk factors for cognitive performance among older African Americans (for further discussion, see Glymour & Manly, 2008). Also recognizing a growing literature on how neighborhood characteristics throughout the life course are associated with later life cognition (e.g., Cherrie et al., 2018), we ensured that the questionnaire asks participants to report on places of residence up until the age of 18 as well as throughout adulthood. Such questions are intended to honor participants’ own unique residential life course histories and to allow for examining how intracohort variation in geographic trajectories might relate to cognition and health in later life.

Second, community advisors indicated how African American adults of this birth cohort might interpret the meaning of particular question wording in particular ways. As an example, the earliest version of the questionnaire included a question about the marital status of the participants’ parents while they were growing up. Study advisors stated that for this cohort of older adults, it would be taboo to ask about the legal standing of their parents’ relationship, in part, because of the historical legacy of institutional discrimination against black people’s ability to marry in the United States (Hunter, 2017). We revised this question as a “yes/no” question regarding whether participants lived with both parents for the majority of the time until age 18. Another item asked participants to reflect on whether adults in the household encouraged them to continue with “their studies.” An advisor commented that this wording could apply to a range of lifelong learning activities for this cohort of African American adults, such as Bible study and adult education. Accordingly, we changed the wording of this item to be more specific, revising it as “encouraged you to stay in school.”

Conclusion

Efforts to design a childhood history questionnaire for older African American adults in greater Newark, New Jersey, indicate the importance of culturally informed measures of childhood. Although this article focuses on the development of questions specifically for older African American adults in a northeastern city of the United States, the insights are broadly applicable for older members of other marginalized racial/ethnic groups. The themes that emerged during the development of the questionnaire (i.e., adopting a resilience orientation, sensitivity in asking questions about ACEs, and orienting to ethnoracially embedded cohort influences) collectively demonstrate how gathering retrospective reports on childhood demands researchers’ sensitivity to way in which experiences of childhood are embedded within life course social-structural positions, sociocultural meanings, and historical time.

While such sensitivity is relevant to studying childhood among individuals from any racial/ethnic background, these considerations are likely to be especially important when engaging individuals from racial/ethnic groups traditionally underrepresented in research. Aronowitz, Deener, Keene, Schnittker, and Tach (2015) describe how “the process of crafting and using seemingly objective knowledge without situating it in historical and social conditions . . . ” can sustain “unequal power relations, because actors have different opportunities to exert their cultural authority” (p. S403). Applying this idea to the design of questions on childhood, questions that might be considered standard within social research (e.g., items about childhood adversity and childhood financial status) required consideration specifically for older African Americans in the northeast region of the United States. Such deliberation involved attending to historical, sociocultural, and social structural conditions of particular relevance for this specific population of older adults.

Moreover, themes from developing the childhood questionnaire further reinforce the idea that research processes are embedded within socially constructed systems of meaning and that “‘the researcher’ is inevitably actively involved, co-constructing particular people and worlds” (Hosking, 1999, p. 118). Such constructive processes are especially salient when asking questions that effectively construct, or reconstruct, circumstances and events occurring decades ago. Sensitivity to the researcher’s role in eliciting information about people’s past is particularly important when studying childhood among older adults from underrepresented racial/ethnic groups because the intersectional positions of the researchers are likely to differ from many members of the focal community being studied. The vast majority of contemporary researchers within the biomedical and social sciences are not persons from underrepresented racial/ethnic groups (Garcia, 2017; Valantine & Collins, 2015). Furthermore, given persistent structural conditions that systematically have limited access to high-quality schooling for many African American youth (Donnor & Dixon, 2016), researchers might also differ from older African American participants in terms of their educational attainment and perhaps their experiences of schooling throughout the life course.

These differences suggest the importance of cultural humility among researchers who are conducting studies on childhood, especially with participants from marginalized groups. Cultural humility is defined as an ongoing “process of self-reflection and discovery to understand oneself and then others in order to build honest and trustworthy relationships” (Yeager & Bauer-Wu, 2013, p. 1). It involves understanding other individuals’ experiences within their own cultural context, as well as introspection on how one’s own social environments have shaped their experiences, thereby better understanding one’s own assumptions, biases, and values (Kumagai & Lypson, 2009). Cultural humility—in contrast to related concepts, such as cultural competence—emphasizes culture as a combination of different social statuses, including race and ethnicity, but also encompassing age, socioeconomic status, gender, and beyond. It also explicitly recognizes power differences within society at large and aspires to redress these differences.

Also because of intersectional differences among research participants and researchers, it is perhaps especially important for retrospective studies on childhood to include individuals from the underrepresented communities of focus as members of the research team. As discussed earlier, feedback from community members on earlier versions of the questionnaire led to critical insights that enhanced the clarity, relevance, inclusiveness, and appropriateness of the questions. Moreover, as we collect face-to-face interview data with participants, our team deliberately includes at least one research team member, who is an older African American adult from the greater Newark area at each session. Including members of the research team from the focal community being studied is a recommended practice for engaging participants from underrepresented racial/ethnic groups in research (Oh et al., 2015). Our sense is that this team member is especially important in helping participants feel more comfortable and respected as they narrate their experiences of childhood, especially in response to questions from the interviewers for this module, who are younger and of European descent. This deliberate strategy to incorporate members of the focal community as part of the study team demonstrates the relevance of a key principle from community-based participatory research—that expertise in foundational research concepts and methods is one form of expertise that can complement other types of expertise, such as knowledge of the community that researchers coming from outside of the community seek to study (Minkler & Wallerstein, 2011).

Scholars of human development and aging are likely among those optimally positioned to voice the importance of attending to issues of cultural humility and the intersection of social structure, cultural diversity, and cohort within research on childhood among members of marginalized racial/ethnic groups. Such scholars have specialized expertise in understanding how heterogeneity across social-ecological levels influence developmental processes and outcomes with advancing aging and to think holistically about a myriad of contextual influences over historical and ontogenetic time (Featherman & Lerner, 1985). Infusing this orientation even more intentionally within studies on how childhood influences later life outcomes, including within the very design of questions to retrospectively assess childhood, has the potential to deepen trust among researchers and research participants, improve the quality of measurement, as well as to help make research, as a social institution in its own right, more equitable and inclusive.

Footnotes

Declaration of Conflicting Interests

The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was supported by a grant from the National Institute on Aging (R01AG057491).

ORCID iD

Emily A. Greenfield

Author Biography

Emily A. Greenfield is an associate professor of Social Work at Rutgers, The State University of New Jersey. Her areas of scholarly expertise include life course human development, civic engagement in later life, age-friendly community initiatives, and aging services.

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