Introduction to Special Section: Advancing Research on the Intersection of Families, Culture, and Health Outcomes

This Special Section of the Journal of Pediatric Psychology on Families, Culture, and Health Outcomes was prompted by increased calls for evaluation of culture in research and clinical work, a perceived dearth of research that accounted for culture in the context of family health beliefs and behaviors, and our own clinical translational programs incorporating culture into family intervention research. In that call, we summarized potential topics to “include the interface between families, culture, and illness management behavior, the identification of family-level risk and protective factors in disease outcomes, and the evaluation of culturally tailored family-based treatments for pediatric conditions.” Our hope is that the original, high-quality research and commentaries included in the special section compel others to investigate the cultural issues that impact their assessments, interventions, and clinical research in pediatric psychology.

The imperative to address families, culture, and health outcomes is underscored by increasing racial, ethnic, and family diversity among the populations we serve, as well as the globalization of pediatric issues in which research and health outcomes for children are reciprocally informed. Data from the 2010 United States Census reveal that only 72.4% of respondents self-identified as “white alone,” indicating that more than a quarter of our current population identifies themselves as ethnic/racial minorities or mixed race (Hixson, Hepler, & Kim, 2011). The proportion of immigrants in the U.S. also continues to increase; in 2009, 11% of the population (33 million people) were second generation immigrants (U.S. born children of immigrant parents; MacArthur Foundation, 2012). Canada has even higher immigration rates than the U.S. In 2006, 19.8% of the Canadian population (6.5 million people) was foreign-born, or first-generation immigrants, resulting in great ethnocultural diversity (Statistics Canada, 2007). This trend is expected to continue in both in countries. By 2040, U.S. population projections indicate that 16.7% of the U.S. population will be foreign-born immigrants (MacArthur Foundation, 2012); in Canada, similar projections indicate 25% to 28% of the population will be foreign born by 2031 (Statistics Canada, 2007).

As a result of these demographic changes, pediatric psychologists are conducting clinical research, providing clinical care, and designing interventions for families with increasingly diverse and complex structure and culture. Immigrant families in which some or all family members are undocumented and families in which parents have limited English proficiency are likely to be represented in greater numbers among the patients we serve. In addition, multigenerational family structures, as well as single head-of-household family structure, proliferate. The proportion of children living with two married parents has decreased substantially over the past three decades (from 77% in 1980 to 66% in 2010); (Lofquist, Lugaila, O'Connell, & Feliz, 2012). This proportion also varies by racial/ethnic background, with 75% of White non-Hispanic children, 61% of Hispanic children, and 35% of Black children living with two married parents in 2010 (Lofquist et al., 2012). As a result of this increasing complexity, how we conceptualize the interconnections between family, culture, and health as we provide evidence-based clinical care, and design studies to provide more effective care, will be increasingly important.

The Journal of Pediatric Psychology has a strong history of investigating child adaptation from a family perspective. In the past decade, a number of editorials and special issues have emphasized the importance of family systems practice (Kazak, Simms, & Rourke, 2002), family-based interventions (Fiese, 2005), and, more recently, family assessment (Barakat & Alderfer, 2011). Additionally, there have been an increasing number of articles focused on health behavior and/or disease management among specific cultural groups, including studies of asthma in African American (Otsuki et al., 2010; Rohan et al., 2010) and Latino youth (Koinis Mitchell et al., 2011; Koinis Mitchell et al., 2012), overweight and obesity among Mexican American (Olvera & Power, 2010) and American Indian (Jollie-Trottier, Holm, & McDonald, 2009) youth, and sexual risk among African American adolescent girls (Sales et al., 2012). Despite these encouraging trends, there is a need for greater, more rigorous research investigating the intersection of family and culture, with clearer articulation of culture and its influence through families on preventive health behaviors and management of chronic health conditions.

The purpose of this Special Section is to encourage dissemination of high-quality research regarding the intersection between culture (e.g., rules, values and beliefs, activities) and family (e.g., nontraditional structures, aspects of family functioning) in pediatric psychology. The manuscripts accepted for this special issue covered a range of topics, including one manuscript emphasizing potential protective effects of cultural identity on disease management and outcomes in sickle cell disease (SCD; Lim, Welkom, Cohen, & Osunkwo, 2012). Acknowledging the importance of immigration and cultural background on weight status, Quon and colleagues evaluated immigration status, acculturation, and overweight among Canadian youth (Quon, McGrath, & Roy-Gagnon, 2012). Two other manuscripts evaluated the complex effects of living with parental HIV, orphan status due to parental death from HIV, and risk of HIV infection among families in Kenya (Puffer et al., 2012) and South Africa (Cluver, Orkin, Boyes, & Gardner, 2012). Lastly, Hilliard and colleagues (Hilliard, Ernst, Gray, Saeed, & Cortina, 2012) provided a synthesis of the literature regarding adapting evidence-based treatments for culturally diverse groups, and then operationalized these recommendations through a number of case vignettes with families from the Middle East, a rapidly growing demographic (Pew Research Foundation, 2011). Importantly, manuscripts address culture indigent to a region and culture in the context of immigration in which culturally based norms, beliefs, and behaviors may differ from the prevalent health behaviors in the adopted country. The commentaries expand on these contributions by discussing the intersection of families, culture, and health outcomes with health policy (Hadley & Houck, 2012) and approaches to identify ways in which culture permeates the social ecology to influence health behaviors (Wilson, 2012).

A number of encouraging trends are seen across the range of topics in this Special Section. First, the research questions posed move the field beyond documenting differences in cultural risk factors and outcomes that are deficit centered, identifying cultural factors that promote health, and proposing mechanisms to explain how disease processes may differ among different cultural groups. Lim and colleagues (2012) found modest support for racial identity as a protective factor in the relationship between pain and physical quality-of-life, highlighting how cultural identity may promote adaptation to diseases that are more prevalent in certain ethnocultural groups, such as SCD among African-Americans in the U.S. This theme has emerged recently in the Journal of Pediatric Psychology. Earlier this year, Koinis Mitchell and colleagues (2012) proposed a risk and protective factors framework to evaluate how individual, family/cultural, and illness-related factors may promote positive asthma outcomes, and how these may differ across different ethnic groups. In the context of risks, higher levels of connectedness found among Latino families were associated with better asthma outcomes for this group (Koinis Mitchell et al., 2012). Taken together, these studies suggest that identifying salient family-based cultural characteristics that may moderate the impact of illness on health outcomes is an important groundwork for the next generation of disease-specific interventions. That culture can present barriers to and facilitators of health, serving as a force in health promotion (Wilson, 2012), is a newly emerging theme in the literature.

Given there are a number of barriers to engaging culturally diverse families in research protocols (Mitchell, Patterson, & Boyd-Franklin, 2011), the manuscripts in this Special Section also represent the results of effective strategies of recruitment and retention with vulnerable populations. Representing strategies that are likely to promote engagement and retention (Mitchell et al., 2011), Lim and colleagues (2012) accessed the SCD population through working collaboratively with two established clinics, and collecting data during their clinic visits. Manuscripts describing research with children and families affected by HIV in Africa illustrate the flexibility needed in such international efforts, including procedures for conducting longitudinal follow-ups with children who had moved to external provinces or were currently incarcerated (Cluver et al., 2012) and utilizing validated child-report methods of parental illness status (Cluver et al., 2012) and economic resources (Puffer et al., 2012). Such examples can enhance the necessary repertoire of strategies to conduct research effectively by engaging and retaining culturally diverse families.

Hilliard and colleagues (2012) provide a very useful template for issues to consider and potential adaptations for treatment when working with culturally diverse families in hospital-based settings. Examples of how to navigate varying expectations regarding medical and psychological treatment, whom in the family to involve in treatment and in what manner, and how to incorporate cultural experts are all presented through the lens of working with a growing population, families from the Middle East. Importantly, this example also moves us beyond looking at traditionally considered “cultural groups” (e.g., African American, Latino, Asian), and recognizes increasing cultural heterogeneity of pediatric patients and their families that present in clinical settings. Wilson (2012) provides more detail regarding how evidence-based interventions can be culturally tailored, through both surface and deep structure changes, to improve effectiveness for diverse patients and their families.

A decade ago, Clay and colleagues (Clay, Mordhorst, & Lehn, 2002) noted the limitations of the pediatric psychology treatment literature in addressing issues of diversity. Most articles reviewed at that time did not report the racial and ethnic composition of the study sample; fewer still investigated race or ethnicity as potential moderators of treatment outcomes. The articles presented in this Special Section indicate that we have made many strides over the past decade. Our investigations have moved beyond questions of how disease outcomes differ by racial and ethnic groups, toward a more nuanced understanding of how the culture and cultural identity forged within a family may affect disease management behavior and moderate health outcomes. Investigation of culture as a potential risk for poor health outcomes as well as a protective factor or resource in health promotion is also an emerging theme. The articles in this Special Section provide a number of strategies for engagement and retention of culturally diverse families; these are complemented by a growing emphasis on describing effective research approaches to use with diverse patient samples in the Journal of Pediatric Psychology (Kao et al., 2011; Mitchell et al., 2011).

Recommendations for Future Research

Our recommendations for ongoing research in the interface between family and culture include a number of broad agendas. First, as the demographics of our clinical populations and research samples become increasingly diverse and complex, we may need to turn our focus to a number of culturally diverse groups less typically studied, such as refugees, families from the Middle East, and those of Native American and First Nations (aboriginal) descent. We must increase our awareness throughout our research efforts that the simpler racial and ethnic categories derived from broad census data may mask important cultural heterogeneity within groups. Simple designations such as “Black” or “Hispanic” will fail to account for important variation between subgroups, such as African Americans, Afro-Caribbeans, and immigrants or refugees from African countries, or the range of Hispanic subgroups from the Caribbean, Mexico, Central, and South America. Second, increased rigor will be required in assessing variables such as acculturation and cultural identity. Simple designations such as generation of immigration or language preference may not suffice; assessments of degree of identification with the family’s culture of origin, intergenerational conflict, and acculturative stress are highly relevant to identifying the process and consequences of acculturation in a more comprehensive manner (Alegria, 2009). As noted in our call for the Special Section, sustaining and advancing research on the intersection of families and culture must include development of explanatory models for understanding these associations using a range of research methodologies including mixed methods designs, allowing identification of mechanisms by which culture influences preventive health behaviors, management of chronic health conditions, and clinical care. Third, training programs must broaden the goals of required multicultural coursework and clinical training opportunities to include framing research questions to incorporate families and culture, exposure to qualitative and quantitative research methodologies that allow the evaluation of such hypotheses, and experience with translational models to allow for effective application of evidence-based assessment and intervention with diverse patients and families. The Journal of Pediatric Psychology encourages submissions in all of these areas, including effective research methods, empirical findings using these approaches, and innovative training models.

Acknowledging the value of cultural knowledge and the importance of finding solutions to promote positive health outcomes based in family culture is critical to creating cultures of health. This process involves translating clinical research findings into health policy solutions that promote health across diverse sociodemographic and ethnocultural groups and family structures. Addressing issues relevant to our pediatric populations, from culturally based individual and family-level barriers to engagement in health-promoting behaviors to health care access and appropriate health care utilization, is key to the successful translation of studies that advance integration of families, culture, and health outcomes.

Funding

This work was supported by K24 HD058794, NIH/NICHD, to Elizabeth McQuaid; RC1MD004418, NIH/NCMHD to Lamia Barakat; and BTRP/U54HL070585, NIH/NHLBI to Lamia Barakat.

Conflicts of interest: None declared.