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2How Families Affect Illness:
Research on the Family’s Influence on Health
Clinical experience holds that families influence and are influenced by the health of their members, and that family-oriented primary care can lead to improved health for both the individual and the family as a whole.
Assumptions and experiences that point toward a new approach to medical care, however, should be scientifically validated through empirical research (i.e., they should be evidence-based).This chapter will examine some impor- tant lines of research on families and health, especially the family’s impact on physical health. There is now a body of well-designed studies and ran- domized controlled trials that demonstrate that family interventions can improve health outcomes (1). This research supports the contention that a partnership between physician, patient, and family may provide the most effective and efficient form of medical care. The clinical implications of this research are presented in the Protocol section of the chapter.
The Family Health and Illness Cycle
The family health and illness cycle developed by Doherty and Campbell can help organize research on families and health because it provides a sequence of families’ experiences with health and illness (2) (See Fig. 2.1).
The two-way arrows between the family and the healthcare system empha- size the importance of families’ ongoing interactions with healthcare pro- fessionals. Starting at the top of the cycle with health promotion and risk reduction, research in each of the six categories will be reviewed.
Family Health Promotion and Risk Reduction
Much of the current suffering and mortality from physical illness now re- sults from chronic, degenerative diseases that result from our own unhealthy behaviors. For example, cardiovascular disease and cancer, which currently account for 75% of all deaths in the United States, are largely the result of unhealthy lifestyles (3). As a result, the Federal government has
initiated a major program entitled “Healthy People 2000” to help promote health and reduce health risks (4).
The World Health Organization has characterized the family as the
“primary social agent in the promotion of health and well being” (5). A healthy lifestyle is usually developed, maintained, or changed within the family setting. Behavioral health-risk factors cluster within families because family members tend to share similar diets, physical activities, and use of substances (e.g., tobacco, alcohol, and illicit drugs) (2). Parents’ health- related behaviors strongly influence whether a child or adolescent will adopt a healthy behavior, and family support is an important determinant of an individual’s ability to change an unhealthy lifestyle. In a 1985 Gallup survey of health related behaviors, more than 1000 adults reported that the spouse or significant other was more likely to influence a person’s health habits than anyone else, including the family doctor.
Almost every important health behavior is a family activity or is strongly influenced by the family. An emphasis on physical activity and fitness is usually a shared family value. Parents’ exercise habits and attitudes have a strong influence on their children’s level of physical activity (6). Individuals with or at high risk for cardiac disease are more likely to participate in a cardiac rehabilitation or exercise program if their spouses are supportive or attend with them (7).
Figure 2.1. Family health and illness cycle.
Smoking remains the number one health problem in the United States today. Like other health behaviors, the initiation, maintenance, and cessa- tion of smoking is strongly influenced by the family. A teenager who has a parent and older sibling who smokes is five times more likely to smoke than a teenager from a nonsmoking family. Smokers are much more likely to marry other smokers, to smoke the same number of cigarettes as do their spouses, and to quit at the same time (8). Although some of this is explained by assortative mating (smokers marry smokers), studies also show smoking behaviors of spouses become more similar with longer mar- riages, suggesting that spouses have a strong influence on each other’s smoking behavior.
The spouse also plays an important role in smoking cessation. Smokers who are married to nonsmokers or ex-smokers are more likely to quit and to remain abstinent than are smokers who are married to smokers.
Supportive behaviors involving cooperative participation (e.g., talking the smoker out of smoking a cigarette) and reinforcement (e.g., expressing pleasure at the smoker’s efforts to quit) predict successful quitting. Negative behaviors (e.g., nagging the smoker and complaining about the smoking) predict relapse (9). Randomized trials of partner support in smoking ces- sation, however, have not been able to improve long-term abstinence rates, in part because they have failed to consider the marital dynamics involved in addiction (1).
Nutrition is an obvious family activity. Family members usually share the same diet and ingest similar amounts of salt, calories, cholesterol, and sat- urated fats (10). Eating behaviors and obesity can play important homeo- static functions within families, and the family plays an important role in the development and treatment of the major eating disorders (i.e., anorexia nervosa and bulimia). Parents often use food as a reward or punishment for their children. Parents’ encouragement of children to eat has been shown to correlate with childhood obesity (11).
Dietary interventions directed at an individual in the family often influ- ence the nutrition of other family members. School-based child nutrition programs have resulted in improvements in the parent’s diet, and the wives of men in cardiac risk reduction programs tend to improve their nutrition as well. Several family focused cardiac risk factor trials have resulted in healthier lifestyles across the entire family (12–14).
In the treatment of obesity, spousal support has been shown to predict successful weight loss, whereas criticism and nagging are associated with poor outcomes. Several randomized controlled trials have shown how the involvement of the spouse significantly improves long-term weight loss.
This research demonstrates that families influence most health- related behaviors and suggests that interventions involving the family are effective and efficient. This research should encourage clinicians to move beyond thinking just about healthy individuals, to promoting
healthy families, and directing our prevention efforts at families as well as individuals.
Vulnerability and Disease Onset/Relapse
There is now ample evidence that psychosocial factors can affect an indi- vidual’s susceptibility to disease, whether it is the common cold or cancer.
Studies of stress and social support have shown the most convincing evi- dence that the family is often the most important source of stress or support and has a potent influence on health.
One successful method for studying stress and its impact on health has been to examine the relationship of stressful life events to illness. Many retrospective and prospective studies have used the Holmes and Rahe scale to demonstrate that stressful life events precedes the development of a wide range of different diseases (15).
Most of the events on the Holmes and Rahe scale occur within the family, and 10 of the 15 most stressful events are family events. Because children are likely to be affected by family stress, a number of studies have looked at the relationship of family life events and child health. In an early study, Meyer and Haggerty (16) found that chronic stress was associated with higher rates of streptococcal pharyngitis, and that 30% of the strep infec- tions were preceded by a stressful family event. Children in a day care setting who experienced more stressful life events had longer but not more frequent episodes of respiratory illness (17). A prospective study of more than 1000 preschoolers found that family life events were strongly corre- lated with subsequent visits to the physician and hospital admissions for a wide range of conditions. Children from families with more than 12 life events during the 4-year study period were six times more likely to be hos- pitalized (18).
The death of a spouse is the most stressful common life event, and the health consequences of bereavement have been extensively studied. Large, well-controlled epidemiological studies have confirmed that the death of a spouse is associated with an increased mortality in the surviving spouse, especially within the first 6 months (19). The effect is greater on surviving men than women, probably because women usually have better social net- works and supports.
Divorce or marital separation is also an extremely stressful event, and is ranked second on the Holmes and Rahe scale. Cross-sectional studies reveal that divorcees have a higher death rate from all diseases than do single, widowed, or married persons (20). Chronic physical illness, however, can have an adverse effect on marital satisfaction and may eventually lead to divorce. Prospective studies of divorce and health are needed to under- stand these relationships.
Research in psychoimmunology has demonstrated that stress can lead to immunosuppression and an increase in illness (21). Two well-controlled
studies demonstrated a decrease in cellular immunity (T-lymphocyte stim- ulation) during bereavement (22, 23). Divorced or separated women have significantly poorer immune function than sociodemographically matched married women (24). Among the married women, poor marital quality cor- related with both depression and decreased immunity. Immune function is also impaired in major depression, and researchers have suggested that changes occurring in the central nervous system during depression may be a final common pathway.
Although family stress can have harmful effects on health, family support can be beneficial. An extensive body of research has demonstrated that social networks and supports can directly improve health, as well as buffer the adverse effects of stress. Furthermore, the family has been found to be the most important source of social support.
Several large epidemiological studies have demonstrated that social iso- lation is highly predictive of mortality and that family support, particularly marriage and contact with relatives, is protective. In an article in the journal Science, sociologist James House (25) reviewed the research on social sup- port and health and concluded:
The evidence regarding social relationships and health increasingly approximates the evidence in the 1964 surgeon general’s report that established cigarette smoking as a cause or risk factor for mortality and morbidity from a range of diseases. The age-adjusted relative risk ratios are stronger than the relative risks for all causes of mortality reported for cigarette smoking.
The relative importance of different aspects of family support may change over the lifespan. Elderly persons with impaired social supports have two- to threefold the death rate of those with good supports (26, 27), but widowhood is not associated with mortality. The presence and number of living children are the most powerful predictors of survival in the elderly.
This finding suggests that adult children become the most important source of social support in older populations.
Family support and family stress, especially bereavement, can have a powerful influence on health and mortality. An understanding of the family and potential sources of stress and support can provide health care pro- fessionals with ways to reduce family stress, bolster family supports, and improve health.
Family Illness Appraisal
Most individuals who experience physical symptoms never consult health professionals, but handle these problems at home with family and friends.
It is estimated that only 10–30% of all health problems are brought to pro- fessional attention. Little is known about what factors influence whether an
individual consults a physician or other health professional under these cir- cumstances. Most research in this area has focused exclusively on such indi- vidual factors as the severity of the symptoms, individual’s health beliefs, and access to health care services. There is considerable evidence, however, that health-care utilization and health appraisal is influenced by family factors and that there are distinct family patterns of healthcare utilization.
When an individual develops symptoms, he or she usually discusses the problem with those closest to that individual (i.e., other family members).
The decision-making process may involve the entire family and be affected by the family’s history with other health problems. One study of middle age couples found that when a decision was made to consult a physician about a symptom, it was usually initiated by the spouse. If the decision was made to wait or delay medical consultation, it was usually the symptomatic person who made the decision, sometimes against the spouse’s advice or wishes.
Prior experiences with similar symptoms often influenced the decision making (28).
Older couples are often more dependent upon each other and seem to have different patterns of decision making. One study found that elderly couples made their health-care decisions jointly, but that the wife usually had a more influential voice in the final decision. This is consistent with the concept that many families have a “family health expert” (29) who has been assigned and assumes the role as the expert in health matters. This role is traditionally played by a woman, often the wife or mother, but it can also be assumed by family members who are health professionals.
The appraisal of a child’s symptom and decision to consult a physician is strongly influenced by the parents’ health beliefs and levels of stress. A child may serve as a surrogate patient who directly or indirectly expresses the stress and dysfunction within the family. A study of 500 families (30) found that family stress dramatically increased utilization of health services, and that there was no evidence of any physical symptoms in one third of visits.
Others have found that a family history of a similar symptom or problemwas the strongest predictor of healthcare treatment for children’s symptoms.
Families often have distinct patterns of healthcare behavior and utiliza- tion. Several studies have shown a strong association among families in their use of medication and health-care services. For example, mother’s health- care utilization is a better predictor of the number of medical visits by the child than the child’s own health status (31). An individual’s use of med- ications is more strongly related to other family members’ medication use than the individual’s severity of symptoms or illness. Because many of the barriers to health-care access (e.g., lack of health insurance, money, trans- portation, or identified source of healthcare) are usually shared by family members, efforts to improve access to healthcare are likely to be more effective and cost efficient if they are directed at families versus individuals.
This research documents the important role of the family in healthcare decision making. It highlights the need for clinicians to inquire about other
family members’ concerns or opinions about the presenting symptoms.
Learning more about the family decision-making process will help the clinician to understand better the reason for the patient’s visit and under- lying fears or concerns of the patient and family.
Family’s Acute Response to Illness
The diagnosis of a serious or life-threatening illness is one of the most feared threats to family life. Illness in the family ranks near the top of the Holmes and Rahe’s Stressful Life Events Scale (15). Many family members can remember the moment that they learned of a serious illness in their family.
A family’s initial response to the diagnosis of a serious illness often follows a predictable course. There may be a period of denial or disbelief about the diagnosis, followed by a rapid mobilization of resources and support within the family. During this crisis phase, most families pull together and rally around the patient, even when there is a history of major conflicts, separation, or disengagement.
Most research on the spouses of acutely ill patients have shown that they experience as high or higher levels of stress and anxiety than the patients (32). This effect is strongest for the wives of male patients. Some men recov- ering from a myocardial infarction (MI) may seem relatively unconcerned, whereas their wives are extremely anxious. Many male cardiac patients report feeling overprotected by their wives, and some studies suggest that this interaction predicts poor functional outcomes.A large body of research, largely from the nursing field, has demonstrated that the family’s greatest need during this acute period is for information about the patient’s health problems. Family members often report feeling left out and uninformed.
Providing information to family members helps to reduce their anxiety and feelings of helplessness. One study of post-MI couples found that the best predictor of the patient’s recovery was whether the wife was provided with information at the time of discharge (33).
Many hospitals still allow only limited family contact with seriously ill patients, often for 5–10 minutes every hour in intensive care units (ICUs).
These policies are based on the unproved belief that family members will either interfere with ongoing medical treatments or tire the patient.
Studies have shown that even the presence of a loved one can have beneficial physiologic effects, especially in the ICU (34). There is some evidence that more collaborative, family-centered inpatient programs speed up the patient’s recovery, reduce hospital stays, and improve patient and family satisfaction. Some hospitals [e.g., the New York University (NYU) Cooperative Care Program] have developed innovative programs that allow family members to remain with the patient throughout the hos- pitalization and provide physical care and emotional support (35).
Research on the family’s response to the acute phase of illness suggests that providing medical information to the family (Level 2—see Chap. 3)
may be the most beneficial level of involvement by healthcare providers. If the illness progresses to a chronic phase, families may experience more dif- ficulties and need more intensive involvement (Level 3 or 4).
Family Adaptation to Illness and Recovery
Families, not healthcare providers, are the primary caretakers for patients with chronic illness. They are the ones who help most with the physical demands of an illness, including the preparation of special meals, adminis- tering medication, and helping with bathing and dressing. In addition, fam- ilies are usually the major source of emotional and social support: someone to share the frustrations, discouragement, and despair of living with chronic illness.
A substantial amount of research has addressed family caregiving and the impact of chronic disease on the family. Chronic illness affects all aspects of family life. Old and familiar patterns of family life are changed forever, shared activities are given up, and family roles and responsibilities must often change. Most patients and their families cope well with the stresses and demands of chronic illness, and tend to pull together and become closer. Some families may become too close or enmeshed; by assuming too much responsibility and care for the ill member, they may inhibit his or her autonomy and independence. Other families may come apart under the stress of chronic illness, and separate or divorce.
The quality of family life and functioning has a strong impact on how well the patient copes with the illness and on long-term health outcomes. The impact of the family on chronic illness has been best studied in children.
Adequate control of diabetes and asthma is strongly correlated with healthy family functioning (2). Chronic family conflict, parental indifference, and low cohesion have all been associated with poor metabolic control in dia- betes, whereas clear family organization and high parental self-esteem cor- relate with good control (1).
In a series of seminal studies, Salvador Minuchin and his colleagues at the Philadelphia Child Guidance Clinic (36, 37) studied poorly controlled diabetic children and their families. These children had recurrent episodes of diabetic ketoacidosis, but when hospitalized, their diabetes was easily managed. It appeared that stress and emotional arousal within the family directly affected the child’s blood sugar. In these families, Minuchin dis- covered a specific pattern of interaction, characterized by enmeshment (high cohesion), overprotectiveness, rigidity, and conflict avoidance. He called these families “psychosomatic families.”
To determine how these family patterns can affect diabetes, Minuchin (37) studied the physiologic responses of diabetic children to a stressful family interview. During the family interview, the children from psychoso- matic families had a rapid rise in free fatty acids (FFA) (a precursor to dia- betic ketoacidosis) that persisted beyond the interview. The parents of these children exhibited an initial rise in FFA levels, which fell to normal when
the diabetic child entered the room. Minuchin hypothesized that parental conflict is detoured or defused through the chronically ill child in psycho- somatic families, and the resulting stress leads to exacerbation of the illness.
Minuchin was the first investigator to demonstrate a link between family and physiologic processes.
In general, the family can influence a disease process by one of two path- ways. As Minuchin demonstrated, the family can have direct psychophysi- ologic effects, or they can influence health-related behaviors (e.g., compliance with medical treatments). In diabetes, it appears that both pathways are important. In emotionally distant or disengaged families, inad- equate supervision and parental support can lead to noncompliance with treatment and poor diabetic control. In enmeshed families, family conflict may lead to emotional arousal and hormonal changes that disrupt diabetic control.
Several different family interventions have been shown to have a bene- ficial effect on childhood illness outcomes. Minuchin and his colleagues (36) successfully treated psychosomatic families using structural family therapy to help disengage the diabetic and establish more appropriate family boundaries. In 15 cases, the pattern of recurrent ketoacidosis ceased and insulin doses were reduced. He reported similar success with asthma and anorexia nervosa occurring in psychosomatic families.
Two randomized controlled trials of family therapy in severe childhood asthma have reported improved health outcomes (38, 39). The therapy was designed to change the family’s strong emotional response to the child’s symptoms. The children who received family therapy had reduced symp- toms, medication use, and school absences. Their lung function improved as well.
The most successful and widely used family interventions for chronic illnesses have been family psychoeducation programs. Family psychoedu- cation provides information, support, and problem-solving skills to help families cope with a chronic illness. Unlike traditional family therapy, the focus of family psychoeducation is on the illness rather than on the family. Family dysfunction is generally viewed as inadequate coping with the illness. Family psychoeducation has been shown to improve outcomes in childhood diabetes, asthma, recurrent abdominal pain, and develop- mental disabilities (1), and is one of the most promising areas for family interventions.
Two different types of family interventions have been effective in the treatment of hypertension. Couples-communication training can lower blood pressure in couples where one member has hypertension (40). In one large study, providing family support to assist with compliance with blood pressure medication resulted in improved compliance, reduced blood pres- sure, and a 50% reduction in cardiac mortality (41). Based upon this and similar compliance research, the National Heart, Lung, and Blood Institute (42) recommends that to increase compliance with antihypertensive regi-
mens, physicians should enhance support from family members by identi- fying and involving one influential person, preferably someone living with the patient, who can provide encouragement, help support the behavior change, and, if necessary, remind the patient about the specifics of the regimen.
With the aging of the population, an increasing number of elderly must rely on family members for care. Most elderly people with Alzheimer’s Disease or some other incapacitating illnesses are cared for at home by adult children and are never institutionalized. Family caregivers experience a tremendous burden and strain in caring for their impaired elders. These caregivers, usually spouses or children, suffer poorer physical and emotional health and have high rates of anxiety and depression (43). Several family psychoeducational programs for caregivers have reduced caregivers’ dis- tress and depression, improved caregivers’ physical health, and have reduced or delayed nursing home admissions (1, 43). These interventions appear to be very cost effective.
Conclusion
Research on families and health demonstrates the powerful influence of the family on health and illness and the benefits of family interventions. It supports the importance of a family-oriented approach to clinical practice;
however, we are just beginning to understand the relationship between families and health, and much more research is needed. Effective family interventions for a wide range of illnesses need to be developed and tested.
Studies of the process of family-oriented medical care are also needed and should include research on different methods of family assessment and the impact of family conferences on patient and family satisfaction and health outcomes.
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