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

Results

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).

Theory

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.

Chronic Conditions

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).

Family Relationships

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.

Intervention Characteristics

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).

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