Families play an extraordinary role in the ways people experience the world and are the principal channel for the transmission of culture. Negotiating society’s demands and experiencing illness, health, and caretaking are all learned within the context of families. Hence, patient-centered care must also be crafted using the family as a framework.

Health care in the United States and other systems with a narrow biomedical perspective, however, focus on the individual patient and not the family. Increasing evidence suggests that by broadening the focus to involve a patient’s family, providers may be better able to understand the onset and development of disease and improve treatment outcomes.^1,2,3,4,5,6 This chapter addresses how considering the family as the context of care can improve the overall health of families in underserved populations.

During the last century, the nuclear family—consisting of two heterosexual, legally married adults living with their biological children—was promoted as the ideal family structure. This exclusionary definition has been challenged: it sanctions only heterosexual unions and legally married partnerships, and it diminishes blended families, families with adoptive children, extended families, and kin relationships.

In fact, the traditional nuclear family has never accurately represented the “typical” family structure in the United States. Only 20% of respondents to the 2010 census might be considered part of traditional families—­consisting of a married couple with children. Single-parent households comprise 9% of the total households in the United States and 24% of children live only with their mothers, and 4% live only with their fathers.⁷ Lesbian and gay Americans living in committed relationships in the same residence are estimated to total 3.1 million. Sixteen percent of same-sex households include a biological, step, or adopted child.⁸

Families internationally are in flux, though two-parent families in some parts of the world are more common than they are in the United States. In the Middle East and in Asia, a majority of children live with two parents. In Europe, North America, Oceania, South America, sub-Saharan Africa, about 20% of children live either with someone other than their biologic parent or in a single-parent household. Many European countries estimate that the number of children living with one parent will increase over the next 15 years. Extended families’ structures that include parents and relatives are common in Asia, the Middle East, South America, and sub-Saharan Africa.⁹

Consequently, alternative definitions of families should be recognized: a family represents a significant group of intimates with a history and a future or any group of people related biologically, emotionally, or legally.¹⁰

FAMILY CAPITAL AND SOCIAL CAPITAL

All families have capital that helps them successfully navigate the world.¹¹ This capital results from economic wealth, maintaining health, and obtaining a sound education. These areas are interrelated; success in one area often determines success in the others.

A family in disarray may place its members at risk for increased financial problems, poor health, and an inability to function in society. Underserved families often store little capital (economic or educational) because of the interaction of poverty, limited access to health care, and inequality in education. However, they may be rich in social capital; relationships bind individuals together, forming networks of cooperation and reciprocity. Strong family cohesion can provide sufficient critical support and might eventually lead to relative prosperity.

Struggling families may develop significant relationships with those working with social institutions (e.g., social welfare offices, refugee and immigration services, county health departments, and the criminal justice system). The benefits of these institutions may be counterbalanced by a loss of control, privacy, and autonomy. Institutions may also have considerable involvement in the intimate functioning of a family and, by assuming familial roles, undermine a family’s sense of competence and self-care. Social services involvement may be intrusive and alienating. For example, a child with iron deficiency might be treated differently if she is from a middle-class family compared with a poor one. In the first instance, she might receive iron therapy and nutritional counseling. In the other, she and her family, appropriately or not, might face scrutiny from a social perspective (as in screening for neglect).

IMPACT OF POVERTY

In 2012, a total of 9.52 million families (11.8%) lived below the federal poverty level (FPV), up from 7.2 million (9.6%) a decade before. Poverty rates for racial and ethnic groups were as follows: whites (9.7%), Latinos (25.6%), African American (27.2%), and Asians (11.7%).¹² While the official FPV for a family of four is $23,850 a year, it is estimated that this same family would need twice that amount to afford basic expenses (food, housing, child care, health insurance, transportation, and utilities).¹³ Importantly, other basic expenses, for example, clothing, cleaning, school supplies, etc., are absent from this list.

For anyone living in poverty, going to the doctor’s office incurs huge costs (e.g., transportation, taking time from work, paying for the visit, paying for prescribed medications). The additional cost of family members accompanying them may prove prohibitive. Families may make choices between paying for health care and meeting other basic needs and may postpone preventive and chronic care, feeling they can only afford these services when seriously ill.

ACCESS TO CARE

The financial, physical, and emotional well-being of all members of a family is jeopardized when any individual within the family lacks adequate health insurance coverage. Illness and medical bills in a family contribute significantly to a family’s debt. In the United States, medical debt is the most common reason for families to declare bankruptcy and undermines families’ housing stability and educational opportunities.¹⁴ Lack of insurance also makes it difficult for families to receive nonfragmented health care. Compared with insured families, uninsured parents are seven times more likely to delay or forego medical care for their children and not fill their prescriptions.¹⁵ Uninsured parents also postpone their own care to pay for their children’s.¹⁶

EDUCATION

Underserved families often experience poor health outcomes related to their impoverished education, low health literacy, and the inability to communicate effectively with their clinicians. The poorly educated, illiterate family may feel less empowered to take control of their care. They may fail to ask questions or admit a lack of understanding about their care for fear that their clinicians will judge them.¹⁷ Non–English-speaking patients often receive care from clinicians who do not speak their language and have minimal access to trained interpreters. Turning to English-speaking family members, often children, to interpret, they may not realize that sensitive information may be filtered, incomplete, or distorted. Clinicians might erroneously judge the family as noncompliant, unmotivated, or manipulative.¹⁸ A supportive, involved family can mitigate some of the risks of low education and poverty. Adult children, spouses, or other family members who help in the daily tasks of self-care may mitigate many health risks and may be one explanation why some immigrants have better than expected health outcomes despite low socioeconomic class.

BIOMEDICAL MODEL

In the biomedical model, the family plays a minor role in care.¹⁹ This model of care greatly restricts how clinicians think about health and illness, the causes of disease, the focus of treatment, and the roles of clinicians, patients, families, and delivery systems. With some exceptions, most clinicians only consider patients’ families when looking for genetic predispositions for disease or for assistance in difficult treatment decisions. Some may even prefer not to interact with family members, because it requires extra time.

The biomedical model also centers the design of health-care systems on the individual patient. Examination rooms generally are large enough for only two people: the patient and the clinician. Medical charts are individually constructed and do not link the care of family members even within the same office setting. Clinicians may not realize that their patients’ family members also receive care in the same health center.

CLINICIAN’S PERSONAL MODEL OF MEDICINE

In addition to the biomedical model’s dominance in the culture of medicine, clinicians bring their own assumptions and values to their practice.²⁰ These beliefs, a complex product of one’s personal family experiences, society’s values, and one’s professional training, influence all clinical decisions. Consciously or unconsciously, clinicians hold assumptions about what constitutes a family; the degree to which family structure and family members are responsible for the development and maintenance of illness; and what the clinician’s own role and the family’s role should be in the patient’s care. Common pitfalls in working with underserved families are shown in Box 22-1.

The culture of health care may differ considerably within families, across generations, and among family members who immigrate at different times or acculturate at different rates. Clinicians are poorly equipped to deal with such differences. Although cultural competency has once again reached national attention, many of the offered educational interventions still rely on stereotyping the commonalities of racial and ethnic groups (e.g., “African-American families expect …, Latino families believe …, Asian families think …”). A more nuanced, systems-based approach acknowledges the importance of shared history within a racial, ethnic, or immigrant group while focusing on the unique experiences of an individual family, its members, and their complex relationships (see Chapter 14). Interventions that educate clinicians about skills they need for this approach are rare.^21,22

Many of the challenges to optimal health for underserved families are linked to social, political, and economic forces. Understanding the resources, strengths, and limitations of a specific family can help mitigate these forces and improve the health of family members. To deliver family-oriented care, providers need to accurately define the patient’s family and understand how a family functions as well as advocate for social and political change (see Chapter 8).

FAMILY SYSTEMS APPROACH

A family systems–oriented or biopsychosocial approach to care expands the biomedical model to include broader forces that influence health and significant interpersonal relationships.^23,24 This paradigm assumes that without focusing on the complex interactions among individuals, their families, and society, one cannot truly understand the individual. Providers must place people in the context of family, time, culture, and society to begin to appreciate who they are.

Clinicians should find out about their patients’ intimate relationships, whether connected legally, biologically, or through shared emotional experience. Families of choice that are not legally sanctioned (e.g., same-sex partnerships, kinship foster care) face special challenges such as not sharing insurance benefits, lacking access to information, and being denied involvement in legal and health-care decision making.

On the other hand, some patients may deny having any family or minimize the degree of interaction with family because of previous family strife and estrangement. However, past family interactions may still have profound effects on one’s overall health. For example, sexual abuse in poor families has more devastating and longer intergenerational effects than in more affluent families, primarily because of fewer resources.²⁵ Even when the abuser is deceased or estranged, the relationship patterns in the family can have profound power, and a clinician can miss important information about how these patterns operate.