Chronic Disease Among African American Families: A Systematic Scoping Review
SYSTEMATIC REVIEW — Volume 17 — December 31, 2020
Katrina R. Ellis, PhD, MPH, MSW1; Hillary K. Hecht, MSW2; Tiffany L. Young, PhD3,4; Seyoung Oh, MSW1; Shikira Thomas, MSPH5; Lori S. Hoggard, PhD6; Zaire Ali, EdM6; Ronke Olawale, MPA, MSW1; Dana Carthron, PhD, RN7; Giselle Corbie-Smith, MD, MSc8; Eugenia Eng, DrPH9 (View author affiliations)
Suggested citation for this article: Ellis KR, Hecht HK, Young TL, Oh S, Thomas S, Hoggard LS, et al. Chronic Disease Among African American Families: A Systematic Scoping Review. Prev Chronic Dis 2020;17:190431. DOI: http://dx.doi.org/10.5888/pcd17.190431external icon.
What is already known on this topic?
We know that multiple chronic conditions (ie, comorbidity or multimorbidity) have a significant effect on individuals and families and that chronic disease morbidity and mortality are disproportionately high among African Americans.
What is added by this report?
This review summarizes research examining chronic conditions among multiple members of African American families to increase understanding of the burden caused by concurrent disease(s) in family systems (ie, family comorbidity or family multimorbidity).
What are the implications for public health practice?
Findings are useful for designing family-based interventions that address challenges families face in managing multiple, co-existing illnesses.
Chronic diseases are common among African Americans, but the extent to which research has focused on addressing chronic diseases across multiple members of African American families is unclear. This systematic scoping review summarizes the characteristics of research addressing coexisting chronic conditions among African American families, including guiding theories, conditions studied, types of relationships, study outcomes, and intervention research.
The literature search was conducted in PsycInfo, PubMed, Social Work Abstracts, Sociological Abstracts, CINAHL, and Family and Society Studies Worldwide to identify relevant articles published from January 2000 through September 2016. We screened the title and abstracts of 9,170 articles, followed by full-text screening of 530 articles, resulting in a final sample of 114 articles. Fifty-seven percent (n = 65) of the articles cited a guiding theory/framework, with psychological theories (eg, social cognitive theory, transtheoretical model) being most prominent. The most common conditions studied in families were depression (70.2%), anxiety (23.7%), and diabetes (22.8%), with most articles focusing on a combination of physical and mental health conditions (47.4%).
In the 114 studies in this review, adult family members were primarily the index person (71.1%, n = 81). The index condition, when identified (79.8%, n = 91), was more likely to be a physical health condition (46.5%, n = 53) than a mental health condition (29.8%, n = 34). Among 343 family relationships examined, immediate family relationships were overwhelmingly represented (85.4%, n = 293); however, extended family (12.0%, n = 41) and fictive kin (0.6%, n = 2) were included. Most (57.0%, n = 65) studies focused on a single category of outcomes, such as physical health (eg, obesity, glycemic control), mental health (eg, depression, anxiety, distress), psychosocial outcomes (eg, social support, caregiver burden), or health behaviors (eg, medication adherence, disease management, health care utilization); however, 43.0% (n = 49) of studies focused on outcomes across multiple categories. Sixteen intervention articles (14.0%) were identified, with depression the most common condition of interest.
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 than previous approaches.
African Americans experience high incidence rates and poor health outcomes for many common chronic health conditions (1–7). Consequently, African American families may be simultaneously managing multiple chronic conditions. At the intersection of family health and chronic health problems, Burton and Whitfield (8) introduced the concept family comorbidity as the existence of physical or mental health problems in a primary caregiver (mother or grandmother) and/or a child in a family. This definition was later refined to include “the presence of multiple co-occurring physical and/or mental health problems within individuals or families” beyond parent/child dyads (9). Theories and research on cumulative disadvantage (9,10) support the propositions that family comorbidity may be associated with individual and familial stressors, burdens, and constraints, which could affect disease onset, development, and management. The concept of family comorbidity highlights an opportunity to increase understanding of health experiences within families, with specific attention to current health status and day-to-day needs of multiple household members (often representing several generations).
The objective of this scoping review was to document family comorbidity among African Americans across a range of health disciplines and types of research. Given the disproportionate burden that chronic diseases place on the lives of African Americans (1–7), persistent racial inequities in health across the lifespan (11,12), and the importance of the familial context for health promotion and disease prevention (13–15), it is useful to understand how family comorbidity has been examined to identify opportunities for future research and interventions to improve outcomes among this population. Moreover, research from the fields of psychology, public health, medicine, social work, sociology, and nursing is of particular interest given their attention to chronic disease (including causes, prevention, and management), the family context, and racial and ethnic disparities in health.
Several key questions guide this scoping review and attend to the fundamental aspects of this research. First, what theories have been used to examine family comorbidity? The choice of theoretical frameworks has implications for the design and conduct of studies and data interpretation (16,17). Second, what chronic conditions have been included in these studies? Bidirectional relationships between physical and mental health are well documented (18–20), and it is important to understand whether conditions studied align with the physical and mental health needs of this population (21–24). Moreover, examining physical and mental health conditions at the family level speaks to interconnectedness observed within these systems (25,26). Third, does a particular family member or condition drive study objectives? Comorbidity is traditionally defined in individuals as the combined effects of multiple health conditions in reference to an index condition (27). This review investigates comorbidity at the family level, identifying index persons and/or index conditions in families. Fourth, what types of familial relationships are included? Family roles and norms can vary by degree of relationship (28–30) and play a critical role in chronic disease prevention and management efforts (31,32). Fifth, what outcomes have been studied? Living with multiple health conditions has been associated with outcomes such as increased disability and poorer quality of life (33); identifying key outcomes associated with multiple conditions among families can highlight trends and gaps in this research. Lastly, existing intervention strategies to promote and maintain positive individual- and family-level chronic disease outcomes can be informative for future efforts. Thus, the final guiding question for this review is, what are the characteristics of interventions designed to address chronic conditions among multiple family members?
This systematic scoping review aims to understand the characteristics of research addressing concurrent family member chronic diseases, identify research gaps, and summarize findings from diverse bodies of literature (34). Key steps to complete the review were 1) design the research questions, 2) develop the search strategy, 3) pilot test and refine the search strategy, 4) screen titles and abstracts using the inclusion/exclusion criteria, 5) screen full-text of articles using the inclusion/exclusion criteria, 6) extract data from included articles, and 7) summarize the findings. Team members were undergraduates, graduate students, postdoctoral fellows, clinicians, and doctoral-level researchers. The lead author trained participating team members to ensure familiarity with the protocol and methods.
In consultation with an experienced academic librarian, our search was conducted in PsycInfo, PubMed, Social Work Abstracts, Sociological Abstracts, CINAHL, and Family and Society Studies Worldwide. We reviewed articles published from January 1, 2000, through September 27, 2016. The search included Medical Subject Headings (MeSH), CINAHL headings, and related text and keyword searches when appropriate. Disease-related search terms were “chronic disease,” “chronic illness,” “comorbidity,” “multimorbidity,” and specific conditions (eg, “arthritis,” “depression,” “hypertension”). Family-related search terms included “family” and relationship types (eg, “father,” “sister,” “sibling”). We identified 11,762 articles through database searching, of which 9,170 were nonduplicated.
We included studies with samples of at least 50% African Americans or Black Americans, or a subgroup analysis of this population. Inclusion criteria specified studies that reported data for at least 2 family members. Family was defined broadly as people related biologically, emotionally, or legally, including fictive kin networks, which are of noted importance among African Americans (35–37). Included studies focused on chronic diseases in 2 or more family members (similar or dissimilar conditions). Chronic diseases were defined as conditions lasting at least 3 months, requiring ongoing care, and generally not preventable by vaccine or curable by medication (38). A member of the research team with clinical nursing expertise provided consultation on chronic condition designations. Inclusion criteria were studies focused on lived experiences with coexisting chronic conditions in families that were original research published in a peer-reviewed journal, in English, with full-text availability. Exclusion criteria were studies focused primarily on genetic susceptibility or future risk of disease, systematic reviews, gray and white literature, dissertations, and conference proceedings.
Covidence software (Covidence.org) was used to complete article screening and full-text review. The lead author independently screened all titles and abstracts for inclusion based on eligibility criteria. If abstracts lacked adequate information to determine inclusion/exclusion, the articles underwent full-text review. During full-text review, 2 team members independently screened each article for inclusion. Disagreements were resolved through a discussion between the 2 full-text reviewers or independent review by a third member of the research team. In total, 8,640 articles were excluded during the title and abstract screening phase, leaving 530 for full-text review (Figure). Of these, 412 articles were excluded, leaving 118 articles. During the data extraction phase, an additional 4 articles were excluded because they did not provide enough information to answer the research questions. Thus, 114 articles met all inclusion criteria.
Flow diagram of article identification, screening, and selection; scoping review of comorbidity and multimorbidity in African American families, January 2000–September 2016. [A text version of this figure is also available.]
Pertinent data from the 114 articles were entered into a spreadsheet (Google Sheets, Google LLC). The study codebook (Google Sheets, Google LLC) detailed the type of data to be extracted from articles to answer the guiding questions, including family size and relationships, racial composition, assessment of chronic conditions, methodology, objectives, and outcomes. Four team members extracted data. Reliability was assessed by having team members extract data from a subsample of articles; interrater reliability was above 90%.
Of the 114 review articles, 66.7% were quantitative studies (n = 76), 15.8% were qualitative studies (n = 18), 14.0% were intervention studies (n = 16), and 3.5% were mixed-methods studies (n = 4) (Table 1). Up to 6 family members provided data. Most articles included females: adult females were 41% to 100% in studies that included them; girls were 29% to 100%. Adult age ranged from 18 to 84 years; children were aged 0 to 18 or 19 years, depending on the study. The percentage of African Americans ranged from 8.1% to 100%. Studies included from 1 to 18,092 family units (median, 119.5 families), and the individual members within family units ranged from 1 to 8 (median, 2 members) (Table 2). More detailed information about each study in our review can be found in the Appendix (http://hdl.handle.net/2027.42/163506).
Fifty-seven percent (n = 65) of articles included a theory or framework guiding their research objectives or study findings, with some articles applying theories from multiple disciplines (thus, in reporting, sums exceed 100%). Of those reporting (n = 65), most theories were psychological, with 78.5% (n = 51) of articles applying psychological theories such as social cognitive theory, the transtheoretical model, or the social ecological framework. Theories and frameworks from sociology (12.3%, n = 8) and health/public health fields (10.8%, n = 7) were the second and third most common.
The chronic condition most frequently examined was depression (70.2%, n = 80), followed by anxiety (23.7%, n = 27), diabetes (22.8%, n = 26), distress (21.1%, n = 24), substance abuse (17.5%, n = 20), coronary heart disease (16.7%, n = 19), hypertension (16.7%, n = 19), Alzheimer disease/dementia (15.8%, n = 18), obesity (14.0%, n = 16), HIV (12.3%, n = 14), and cancer (12.3%, n = 14). Most articles reported on a combination of physical and mental health conditions (47.4%, n = 54); 32.5% (n = 37) of articles reported solely on mental health conditions, and 20.2% (n = 23) reported solely on physical health conditions. Articles measured chronic conditions by severity of the conditions (74.6%, n = 85), type(s) of conditions (38.6%, n = 44), and/or the number of conditions reported (9.6%, n = 11).
Index person(s) and condition(s)
In this review, we defined the index person(s) as the individual(s) in the family whose chronic condition provided the key area of focus and/or whose condition led to the development of the study. Most articles (88.6%, n = 101) had 1 index person and 11.4% (n = 13) had multiple index persons (eg, parent/child, couples, siblings, or other groups of family members). In the examination of the age of index persons(s), 71.1% (n = 81) were adults (>18 years), 24.6% (n = 28) were children (≤19), 2.6% (n = 3) were a mix of adults and children, and age of index person was not reported in 1.8% (n = 2) of articles.
In most articles (79.8%, n = 91), an index condition was also identified: 46.5% (n = 53) described the index person as having a specific physical condition, 29.8% (n = 34) described the index person as having a specific mental condition, and 3.5% (n = 4) described the index person as having physical and mental health conditions. An index condition was not identified in 20.2% (n = 23) articles.
Of the 91 articles that identified index conditions, the most common conditions were Alzheimer disease/dementia (18.7%, n = 17), depression (14.3%, n = 13), HIV (12.1%, n = 11), cancer (7.7%, n = 7), and heart disease/heart problems (7.7%, n = 7).
We documented 343 descriptions of family relationships in study samples across the 114 articles. We grouped these relationships into 4 categories: immediate family, extended family, fictive kin, and other.
We defined immediate family as parents (mothers and fathers), spouses or partners, grandparents, children, and grandchildren, and siblings. Immediate family relationships were most common; we encountered 293 instances of these family relations (85.4% of the 343 relationships described). In the immediate family category (n = 293), roles were 19.5% parents (use of broad term, ie, mothers and fathers) (n = 57), 18.8% (n = 55) young children, 15.4% (n = 45) adult children, 15.4% spouses or partners (n = 45), 11.9% (n = 35) mothers, 6.1% (n = 18) siblings, 5.1% (n = 15) grandparents, 3.1% (n = 9) young grandchildren, 2.7% (n = 8) fathers, and 2.0% (n = 6) adult grandchildren. The most common relationship pairings were spouses/partners, parents/adult children, and mothers/young children.
Extended family included family members outside the immediate family (eg, aunts, uncles, cousins, and other relatives). We encountered 41 instances of extended family relationships (12.0% of 343 relationships).
We defined fictive kinship as a relationship type wherein individuals who are not related by either birth or marriage but have an emotionally significant relationship with another individual that emulates characteristics of a familial relationship. We found 2 instances of fictive kin relationships. In 7 other instances, the authors used the term caregiver broadly without mention of specific relatives or family. Individuals were described as legal guardians, guardians, or the author specifically labeled the relationship as “other.”
Study outcomes and focus
We categorized study outcomes or the focus of qualitative research into 4 categories: physical health, mental health, psychosocial, and behavioral. Studies focused on a single category of outcomes (57.0%, n = 65) or multiple categories of outcomes (43.0%, n = 49). Studies focusing on mental health outcomes (50.0%, n = 57) included, for example, depression, distress, and anxiety. Psychosocial outcomes (42.1%, n = 48) include caregiver burden, social support, and child’s educational outcomes. Studies focusing on physical health outcomes (39.5%, n = 45) included, for example, physical functioning limitations, child obesity, glycemic control, and systolic blood pressure. Of studies focusing on behavioral outcomes (21.1%, n = 24), outcomes included adherence to therapy, condition management, and health service utilization.
The review included 16 intervention studies (14.0% of all studies). Among these 16 studies, interventions occurred at single or multiples settings, including participant homes (37.5%, n = 6), clinical settings (18.8%, n = 3), via telephone (18.8%, n = 3), at a school (12.5%, n = 2), and via videoconference (6.25%, n = 1); 3 studies (18.8%) did not report setting information. Intervention content addressed psychosocial factors (62.5%, n = 10), health education (37.5%, n = 6), health behaviors (31.3%, n = 5), and mental health (12.5%, n = 2). One or more chronic conditions were of interest in interventions. The most frequently reported were depression (62.5%, n = 10), distress (37.5%, n = 6), and Alzheimer disease/dementia (37.5%, n = 6). Self-efficacy and social cognitive theory guided or framed 7 intervention studies (43.8%); some of the intervention articles (31.3%, n = 5) did not report a guiding theory or framework. Most interventions (68.8%, n = 11) reported outcomes for multiple family members and the same outcomes for each individual (eg, improving family communication, quality of life).
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.
This work was supported by the National Cancer Institute–funded Cancer Health Disparities Training Program (T32CA128582), the National Institutes of Health (NIH) Loan Repayment Program (L60 MD011052), the Center for Health Equity Research at the University of North Carolina at Chapel Hill, a grant from the National Institutes of Health (P30 AG015281) and the Michigan Center for Urban African American Aging Research (K.R.E.), a grant from the National Heart, Lung, and Blood Institute to the University of Mississippi Medical Center (2R25HL126145), an NHLBI K24 award (K24 HL105493) and an NIH/ National Center for Advancing Translational Sciences grant to the North Carolina Translational and Clinical Science Institute (UL1 TR-000083; T.L.Y.). The authors thank Shirley A. Herbert, BA, and Dolapo Raji, MPH, for their research assistance. No copyrighted surveys, instruments, or tools were used in this data analysis.
Corresponding Author: Katrina R. Ellis, PhD, MPH, MSW, Assistant Professor, University of Michigan, School of Social Work, Room 3849, Ann Arbor, MI 48109. Telephone: 734-615-3487. Email: firstname.lastname@example.org.
Author Affiliations: 1University of Michigan, School of Social Work, Ann Arbor, Michigan. 2University of North Carolina at Chapel Hill, Gillings School of Global Public Health, Department of Health Policy and Management, Chapel Hill, North Carolina. 3University of North Carolina at Chapel Hill, North Carolina Translational Research and Clinical Sciences Institute, Chapel Hill, North Carolina. 4Lenell and Lillie Consulting, LLC, New Bern, North Carolina. 5University of North Carolina at Chapel Hill, Cecil G. Sheps Center for Health Services Research, Chapel Hill, North Carolina. 6Rutgers University–New Brunswick, Department of Psychology, New Brunswick, New Jersey. 7North Carolina Central University, College of Behavioral Sciences, Durham, North Carolina. 8University of North Carolina at Chapel Hill, School of Medicine, Department of Social Medicine, Chapel Hill, North Carolina. 9University of North Carolina at Chapel Hill, Gillings School of Global Public Health, Department of Health Behavior, Chapel Hill, North Carolina.
- Williams DR, Wyatt R. Racial bias in health care and health: challenges and opportunities. JAMA 2015;314(6):555–6. CrossRefexternal icon PubMedexternal icon
- Zhang Q, Wang Y, Huang ES. Changes in racial/ethnic disparities in the prevalence of type 2 diabetes by obesity level among US adults. Ethn Health 2009;14(5):439–57. CrossRefexternal icon PubMedexternal icon
- McWilliams JM, Meara E, Zaslavsky AM, Ayanian JZ. Differences in control of cardiovascular disease and diabetes by race, ethnicity, and education: U.S. trends from 1999 to 2006 and effects of Medicare coverage. Ann Intern Med 2009;150(8):505–15. CrossRefexternal icon PubMedexternal icon
- Zeng C, Wen W, Morgans AK, Pao W, Shu X-O, Zheng W. Disparities by race, age, and sex in the improvement of survival for major cancers: results from the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) Program in the United States, 1990 to 2010. JAMA Oncol 2015;1(1):88–96. CrossRefexternal icon PubMedexternal icon
- Akinbami LJ, Moorman JE, Simon AE, Schoendorf KC. Trends in racial disparities for asthma outcomes among children 0 to 17 years, 2001–2010. J Allergy Clin Immunol 2014;134(3):547–553.e5. CrossRefexternal icon PubMedexternal icon
- Barnes LL, Bennett DA. Alzheimer’s disease in African Americans: risk factors and challenges for the future. Health Aff (Millwood) 2014;33(4):580–6. CrossRefexternal icon PubMedexternal icon
- Jackson JS, Knight KM, Rafferty JA. Race and unhealthy behaviors: chronic stress, the HPA axis, and physical and mental health disparities over the life course. Am J Public Health 2010;100(5):933–9. CrossRefexternal icon PubMedexternal icon
- Burton LM, Whitfield KE. “Weathering” towards poorer health in later life: co-morbidity in urban low-income families. Public Policy Aging Rep 2003;13(3):13–8. CrossRefexternal icon
- Burton LM, Bromell L. Childhood illness, family comorbidity, and cumulative disadvantage: an ethnographic treatise on low-income mothers’ health in later life. Annu Rev Gerontol Geriatr 2010;30(1):233–65. CrossRefexternal icon
- Pavela G, Latham K. Childhood conditions and multimorbidity among older adults. J Gerontol B Psychol Sci Soc Sci 2016;71(5):889–901. CrossRefexternal icon PubMedexternal icon
- Williams DR. Miles to go before we sleep: racial inequities in health. J Health Soc Behav 2012;53(3):279–95. CrossRefexternal icon PubMedexternal icon
- Adler NE, Stewart J. Health disparities across the lifespan: meaning, methods, and mechanisms. Ann N Y Acad Sci 2010;1186(1):5–23. CrossRefexternal icon PubMedexternal icon
- Gruber KJ, Haldeman LA. Using the family to combat childhood and adult obesity. Prev Chronic Dis 2009;6(3):A106. PubMedexternal icon
- Zimmerman RS, Connor C. Health promotion in context: the effects of significant others on health behavior change. Health Educ Q 1989;16(1):57–75. CrossRefexternal icon PubMedexternal icon
- Rimal RN. Intergenerational transmission of health: the role of intrapersonal, interpersonal, and communicative factors. Health Educ Behav 2003;30(1):10–28. CrossRefexternal icon PubMedexternal icon
- Bowleg L. Towards a critical health equity research stance: why epistemology and methodology matter more than qualitative methods. Health Educ Behav 2017;44(5):677–84. CrossRefexternal icon PubMedexternal icon
- Dunn JR, van der Meulen E, O’Campo P, Muntaner C. Improving health equity through theory-informed evaluations: a look at housing first strategies, cross-sectoral health programs, and prostitution policy. Eval Program Plann 2013;36(1):184–90. CrossRefexternal icon PubMedexternal icon
- Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study. Lancet 2012;380(9836):37–43. CrossRefexternal icon PubMedexternal icon
- Prince M, Patel V, Saxena S, Maj M, Maselko J, Phillips MR, et al. No health without mental health. Lancet 2007;370(9590):859–77. CrossRefexternal icon PubMedexternal icon
- Naylor C, Das P, Ross S, Honeyman M, Thompson J, Gilburt H. Bringing together physical and mental health: a new frontier for integrated care. London (GB): The King’s Fund; 2016.
- Murphy SL, Xu J, Kochanek KD, Arias E. Mortality in the United States, 2017. NCHS Data Brief 2018;(328):1–8. PubMedexternal icon
- Johnson NB, Hayes LD, Brown K, Hoo EC, Ethier KA; Centers for Disease Control and Prevention. CDC national health report: leading causes of morbidity and mortality and associated behavioral risk and protective factors — United States, 2005–2013. MMWR Suppl 2014;63(4):3–27. PubMedexternal icon
- Mojtabai R, Olfson M, Han B. National trends in the prevalence and treatment of depression in adolescents and young adults. Pediatrics 2016;138(6):e20161878. CrossRefexternal icon PubMedexternal icon
- Guglielmo D, Hootman JM, Boring MA, Murphy LB, Theis KA, Croft JB, et al. Symptoms of anxiety and depression among adults with arthritis — United States, 2015–2017. MMWR Morb Mortal Wkly Rep 2018;67(39):1081–7. CrossRefexternal icon PubMedexternal icon
- Ellis KR, Janevic MR, Kershaw T, Caldwell CH, Janz NK, Northouse L. The influence of dyadic symptom distress on threat appraisals and self-efficacy in advanced cancer and caregiving. Support Care Cancer 2017;25(1):185–94. CrossRefexternal icon PubMedexternal icon
- Kershaw T, Ellis KR, Yoon H, Schafenacker A, Katapodi M, Northouse L. The interdependence of advanced cancer patients’ and their family caregivers’ mental health, physical health, and self-efficacy over time. Ann Behav Med 2015;49(6):901–11. CrossRefexternal icon PubMedexternal icon
- Nicholson K, Makovski TT, Griffith LE, Raina P, Stranges S, van den Akker M. Multimorbidity and comorbidity revisited: refining the concepts for international health research. J Clin Epidemiol 2019;105:142–6. CrossRefexternal icon PubMedexternal icon
- Waites C. Building on strengths: intergenerational practice with African American families. Soc Work 2009;54(3):278–87. CrossRefexternal icon PubMedexternal icon
- Taylor RJ, Mouzon DM, Nguyen AW, Chatters LM. Reciprocal family, friendship and church support networks of African Americans: findings from the National Survey of American Life. Race Soc Probl 2016;8(4):326–39. CrossRefexternal icon PubMedexternal icon
- Moras A, Shehan C, Berardo FM. African American families: historical and contemporary forces shaping family life and studies. In: Batur P, Feagin JR, editors. Handbook of the sociology of racial and ethnic relations. Second edition. Basel (CH): Springer International Publishing; 2018. p. 91–107.
- Grey M, Schulman-Green D, Knafl K, Reynolds NR. A revised self- and family management framework. Nurs Outlook 2015;63(2):162–70. CrossRefexternal icon PubMedexternal icon
- Ellis KR, Young TL, Carthron D, Simms M, McFarlin S, Davis KL, et al. Perceptions of rural African American adults about the role of family in understanding and addressing risk factors for cardiovascular disease. Am J Health Promot 2019;33(5):708–17. CrossRefexternal icon PubMedexternal icon
- Salive ME. Multimorbidity in older adults. Epidemiol Rev 2013;35(1):75–83. CrossRefexternal icon PubMedexternal icon
- Pham MT, Rajić A, Greig JD, Sargeant JM, Papadopoulos A, McEwen SA. A scoping review of scoping reviews: advancing the approach and enhancing the consistency. Res Synth Methods 2014;5(4):371–85. CrossRefexternal icon PubMedexternal icon
- McDaniel SH, Campbell TL, Hepworth J, Lorenz A. Family-oriented primary care. New York (NY): Springer-Verlag; 2005.
- Taylor RJ, Chatters LM, Woodward AT, Brown E. Racial and ethnic differences in extended family, friendship, fictive kin and congregational informal support networks. Fam Relat 2013;62(4):609–24. CrossRefexternal icon PubMedexternal icon
- Chatters LM, Taylor RJ, Jayakody R. Fictive kinship relations in black extended families. J Comp Fam Stud 1994;25(3):297–312. CrossRefexternal icon
- Goodman RA, Posner SF, Huang ES, Parekh AK, Koh HK. Defining and measuring chronic conditions: imperatives for research, policy, program, and practice. Prev Chronic Dis 2013;10:120239. CrossRefexternal icon PubMedexternal icon
- Valderas JM, Starfield B, Sibbald B, Salisbury C, Roland M. Defining comorbidity: implications for understanding health and health services. Ann Fam Med 2009;7(4):357–63. CrossRefexternal icon PubMedexternal icon
- Bengtson VL, Elder GH Jr, Putney NM. The life course perspective on ageing: linked lives, timing, and history. In: Katz J, Peace S, Spurr S, editors. Adult lives: a life course perspective. Bristol (GB): Policy Press, University of Bristol; 2012. p. 9–17.
- Umberson D, Olson JS, Crosnoe R, Liu H, Pudrovska T, Donnelly R. Death of family members as an overlooked source of racial disadvantage in the United States. Proc Natl Acad Sci USA 2017;114(5):915–20. CrossRefexternal icon PubMedexternal icon
- Gonzalez M, Jones D, Parent J. Coparenting experiences in African American families: an examination of single mothers and their nonmarital coparents. Fam Process 2014;53(1):33–54. CrossRefexternal icon PubMedexternal icon
- Edin K, Tach L, Mincy R. Claiming fatherhood: race and the dynamics of paternal involvement among unmarried men. Ann Am Acad Pol Soc Sci 2009;621(1):149–77. CrossRefexternal icon PubMedexternal icon
- King V, Harris KM, Heard HE. Racial and ethnic diversity in nonresident father involvement. J Marriage Fam 2004;66(1):1–21.
- Arias E. Changes in life expectancy by race and Hispanic origin in the United States, 2013–2014. NCHS Data Brief 2016;(244):1–8. PubMedexternal icon
- Carr D, Springer K. Advances in families and health research in the 21st century. J Marriage Fam 2010;72(3):743–61. CrossRefexternal icon
- de Groot V, Beckerman H, Lankhorst GJ, Bouter LM. How to measure comorbidity. A critical review of available methods. J Clin Epidemiol 2003;56(3):221–9. CrossRefexternal icon PubMedexternal icon
- Mukherjee B, Ou H-T, Wang F, Erickson SR. A new comorbidity index: the health-related quality of life comorbidity index. J Clin Epidemiol 2011;64(3):309–19. CrossRefexternal icon PubMedexternal icon
- Fultz NH, Ofstedal MB, Herzog AR, Wallace RB. Additive and interactive effects of comorbid physical and mental conditions on functional health. J Aging Health 2003;15(3):465–81. CrossRefexternal icon PubMedexternal icon
- Bandura A. Exercise of human agency through collective efficacy. Curr Dir Psychol Sci 2000;9(3):75–8. CrossRefexternal icon
- Grey M, Knafl K, McCorkle R. A framework for the study of self- and family management of chronic conditions. Nurs Outlook 2006;54(5):278–86. CrossRefexternal icon PubMedexternal icon
- Antonucci TC, Jackson JS, Biggs S. Intergenerational relations: theory, research, and policy. J Soc Issues 2007;63(4):679–93. CrossRefexternal icon
- Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol 2005;8(1):19–32. CrossRefexternal icon
- Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci 2010;5(1):69. CrossRefexternal icon PubMedexternal icon
- Peters MDJ, Godfrey CM, Khalil H, McInerney P, Parker D, Soares CB. Guidance for conducting systematic scoping reviews. Int J Evid-Based Healthc 2015;13(3):141–6. CrossRefexternal icon PubMedexternal icon
|Characteristic||No. of Studies Reporting, n (%)a|
|Mixed methods||4 (3.5)|
|Family members in study|
|Not reported/unclear||18 (15.8)|
|Family members providing datab|
|Not reported/unclear||4 (3.5)|
|Theories and methods|
|No theory identified||49 (43.0)|
|Any theory identified||65 (57.0)|
|Theory by discipline (n = 65)a|
|Public health||7 (10.8)|
|Family studies||3 (4.6)|
|Depression/depressive symptoms||80 (70.2)|
|Substance abuse||20 (17.5)|
|Coronary heart disease/heart attack||19 (16.7)|
|Alzheimer disease/dementia||18 (15.8)|
|Kidney problems||7 (6.1)|
|Mood (affective) disorders||4 (3.5)|
|Bipolar disorder||2 (1.8)|
|Chronic obstructive pulmonary disease||1 (0.9)|
|Autism spectrum||1 (0.9)|
|Family members with the same condition||42 (36.8)|
|Chronic condition category|
|Physical and mental health conditions||54 (47.4)|
|Mental health conditions||37 (32.5)|
|Physical health conditions||23 (20.2)|
|Chronic condition assessment|
|Assessment by study staff||37 (32.5)|
|Medical records||14 (12.3)|
|Chronic condition measure|
|Number of chronic conditions||11 (9.6)|
|Age of index persons|
|Adult (≥18 y)||81 (71.1)|
|Child (<18 y)||28 (24.6)|
|Adult and child||3 (2.6)|
|Not reported||2 (1.8)|
|Physical and mental||4 (3.5)|
|Not identified||23 (20.2)|
|Family relationship (N = 343 descriptions)c|
|Immediate family||293 (85.4)|
|Extended family||41 (12.0)|
|Fictive kin||2 (0.6)|
|Immediate family representation (N = 293 descriptions)|
|Parents (broadly referenced)d||57 (19.5)|
|Young children (<18 y)||55 (18.8)|
|Adult children (≥18 y)||45 (15.4)|
|Spouses or partners||45 (15.4)|
|Young grandchildren (<18 y)||9 (3.1)|
|Adult grandchildren (≥18 y)||6 (2.0)|
|Study outcomes or focuse|
|Mental health||57 (50.0)|
|Psychosocial health||48 (42.1)|
|Physical health||45 (39.5)|
|Health behaviors||24 (21.0)|
|Intervention characteristics (n = 16 articles)f|
|Not reported||3 (18.8)|
|Health education||6 (37.5)|
|Health behavior||5 (31.2)|
|Mental health management||2 (12.5)|
|Depression/depressive symptoms||10 (62.5)|
|Alzheimer disease/dementia||6 (37.5)|
|Coronary heart disease/heart attack||5 (31.2)|
|Substance abuse||3 (18.8)|
|Mood disorders||2 (12.5)|
|Sexually transmitted diseases||2 (12.5)|
|Kidney problems||1 (6.2)|
|Individual participants, no.||809.3||196||1–36,184|
|Family units, no.||473.2||120||1–18,092|
|Minimum individuals per family, no.||2.0||2||1–7|
|Maximum individuals per family, no.||2.3||2||1–8|
The opinions expressed by authors contributing to this journal do not necessarily reflect the opinions of the U.S. Department of Health and Human Services, the Public Health Service, the Centers for Disease Control and Prevention, or the authors’ affiliated institutions.