Chronic Disease Among African American Families

A Systematic Scoping Review

Katrina R. Ellis, PhD, MPH, MSW; Hillary K. Hecht, MSW; Tiffany L. Young, PhD; Seyoung Oh, MSW; Shikira Thomas, MSPH; Lori S. Hoggard, PhD; Zaire Ali, EdM; Ronke Olawale, MPA, MSW; Dana Carthron, PhD, RN; Giselle Corbie-Smith, MD, MSc; Eugenia Eng, DrPH

Disclosures

Prev Chronic Dis. 2020;17(12):e167 

In This Article

Discussion

This review summarizes the scope of fundamental characteristics of research examining co-occurring chronic conditions among African American families. Most articles focused on a combination of physical and mental health conditions in families, with depression, anxiety, and diabetes the most common. Where an index person or condition was identified, index persons were primarily adults and index conditions were primarily physical health conditions (eg, Alzheimer disease, HIV, cancer, heart conditions). Immediate family relationships were most frequently represented, led by parents, young children, adult children, and spouses. Slightly more than half of the articles included a theory or framework to guide the study or interpret findings. Many studies (43.0%, n = 49) focused on multiple types of health outcomes, categorized as mental (50.0%, n = 57), psychosocial (42.1%, n = 48), physical (39.5%, n = 45), and health behaviors (21.0%, n = 24). The most common diseases of focus in interventions were Alzheimer disease/dementia, heart disease/heart problems, and cancer.

Burton and Bromell[9] define family comorbidity as the presence of multiple co-occurring physical and/or mental health problems in either individuals or families. Review findings highlight, however, the potential benefit of distinguishing family comorbidity and family multimorbidity in ways similar to individual comorbidity and multimorbidity by taking into account the presence or absence of an index condition. Comorbidity is typically defined as medical conditions existing in relation to a single index condition.[39] Applying this definition at the family level, we found family comorbidity documented in approximately 4 of 5 articles in which an index condition was apparent (eg, study of mothers with diabetes and their children). In contrast, multimorbidity is conceptualized as the co-occurrence of 2 or more conditions.[38,39] Approximately 1 of 5 review articles did not indicate an index condition, but co-occurring conditions among family members were reported (eg, study of older couples with chronic health problems); thus, these studies could be characterized as investigating family multimorbidity. As this research progresses, it would be useful to consider similarities and differences between comorbidity and multimorbidity at individual and family levels, role implications for index persons (eg, parent, adult child), and how individual-level disease frameworks may be adapted to intervene in ways that help families manage coexisting illnesses.

The chronic conditions represented mirror leading causes of illness in the United States.[21–24] Although health statistics capturing individual illness are integral to the prevention and management of chronic disease, the absence of data capturing illness at the family level limits our ability to estimate family-level burden of disease at single time points or across the life course.[40] In research on the effect of death on families, Umberson and colleagues[41] reported that African Americans are more likely than White people to experience the death of multiple family members from childhood through mid-to-late life. They argue that the death of family members is an overlooked and underappreciated source of racial inequality in the United States that could contribute to intergenerational transmissions of health disadvantage.[41] Future research should consider the role of family comorbidity and family multimorbidity in the intergenerational transmission of health disadvantage. To that end, our review found that 2 of the 3 most common relationships represented in the studies were intergenerational: parents and young children (primarily mother/child), and adult children and parents. Despite the substantial involvement of African American fathers with their children[42–44] and lower life expectancy among African American men compared with other racial groups,[45] African American fathers were represented in only 2.7% (n = 8) of immediate family relationships observed in studies (excluding studies of parents, broadly). Ongoing work will benefit from examining relationships beyond commonly represented mother/child and intimate partners dyads[46] and focusing on experiences among larger and more varied African American family units.

Articles primarily examined associations between study objectives and the severity of chronic conditions (74.6%, n = 85), followed by investigations based on the type of chronic conditions (38.6%, n = 44), and/or the number of chronic conditions (9.6%, n = 11). Each of these measurements is useful to consider alone or in combination when investigating co-occurring chronic conditions in families. Research based on the type of condition can be helpful for understanding the effect of specific conditions and care needs when considering the role of family members in care management. Understanding the severity of conditions can highlight the trajectory of progression of disease(s) and evolving care needs of family members, and how condition intensity affects other members' own health and disease management. Considering the number of conditions that a family experiences may be a helpful marker for estimating the complexity of care needs and the potential for co-occurring symptoms or treatments. Common indices and measures of individual comorbidity[47,48] could be useful starting points for designing effective measures of family chronic disease burden. Furthermore, research on multimorbidity among individuals has investigated both additive and interactive effects,[49] and testing these hypotheses within the context of family multimorbidity would also be informative. Future research should also investigate the predictive and explanatory value of family comorbidity and family multimorbidity, and implications for individual and family-level disease management and outcomes.

Of the 16 intervention studies reviewed, most reported outcomes for family members and also measured the same outcomes for each individual (eg, improving family communication). Three of the 16 studies occurred in clinic settings, highlighting opportunities to develop family-focused, clinic-based interventions to support families in managing coexisting chronic health conditions together. There are many ways to capitalize on family-level strengths when designing health interventions to address co-occurring chronic conditions and factors that influence condition management. Such interventions can draw on the knowledge and resources within families, bolster helpful behavior modeling by family members, and build on motivations to see loved ones develop successful habits that may improve livelihood for years to come. Self-efficacy and social cognitive theory were the most common guiding frameworks for these interventions. A more explicit focus on collective family efficacy,[50] along with self-efficacy, could improve understanding of individual and family-level confidence to engage in varied aspects of chronic disease management. Other frameworks not represented in this review (intervention articles or otherwise) that specify factors that influence family management of disease,[31,51] the unique aspects of intergenerational support and well-being,[52] and family roles and functioning[46] may be useful for identifying leverage points for interventions with a family comorbidity and/or family multimorbidity lens.

This work is novel in its approach to documenting research on chronic disease among African American families in a systematic way, but the review was limited to approximately 16 years of peer-reviewed literature. Consequently, we did not capture research published before or after the review. In line with scoping reviews,[53,54] we did not assess study quality, because a primary objective of scoping reviews is to provide an overview of research, regardless of quality.[55] Lastly, in contrast to meta-analysis, which errs on the side of exclusion to produce more precise statistical summaries, our scoping review errs on the side of inclusion to capture the depth and breadth of this research. For example, our measure of depression as a chronic health condition was broad, including studies examining depressive symptoms and not limited to refined definitions of chronic depression. This approach resulted in a sample size much larger than many published reviews (>100 articles) but limits our ability to estimate effect sizes.

Examinations of health problems within families often focus on the effect of providing care to a family member with a health issue (ie, caregiving), the effect of receiving care from family members because of a health issue (ie, perspectives of care recipients), and the documentation of health issues in families to understand similarities and risks (ie, family health history, concordance). Recognizing the multiple, simultaneous health issues facing families through a lens of family comorbidity and family multimorbidity may more accurately mirror the lived experiences of many African American families and better elucidate intervention opportunities.

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