Maximizing Patients Health Through Engagement With Families

Growing evidence has shown the myriad ways that social relationships influence health. For most patients, the most influential relationships are those with family members. Yet most research on how to best treat or manage a patient's health has focused interventions on the individual and targeted a singular disease condition. This chapter will review research demonstrating the impact of social relationships on health, then focus on ways to assess and best use these relationships to maximize a patient's well-being. Concluding comments will outline the need for working models to engage a patient's family in support of health care services and then propose future directions that should be explored in a clinical research context. The focus will be on assisting medical and mental health providers who work in busy primary care settings to assess and engage families for maximal patient health.

Impact of Social Factors on Health
Research and clinical evidence indicates that the application of social interventions has helped stem the spread of disease for more than 100 years, with public health policies having the greatest impact on the health of the world's population. That is, more than 100 years ago the germ theory promoted our understanding of the social transmission of disease; individuals exposed to others with disease or social conditions associated with poverty were more likely to fall ill. More recent research has examined the specific mechanisms of the effect of social relationships on health, but the perspective most often looks at how it relates to individual health. However, there are many important problems that can be identified as family health issues. Examples include children with physical or developmental disabilities, bereavement, and healthy behaviors such as diet and exercise changes. Other topics include teenage. pregnancy, infertility, hypertension, cardiac rehabilitation, cancer, chronic illness, depression, and family violence (Srnilkstein, 1994).

Campbell (2003) provided an excellent review of the mechanisms by which one's social relationships, especially within the family, may influence health. Studies have shown that conflict in relationships influences psycho-physiological processes that result in disease. Ewart, Taylor, Kraemer, and Agras (1991) as well as Gottman (1994) have shown that criticism between family members increases blood pressure. Kiecolt-Glaser and Newton (2001) and Kiecolt-Glaser and colleagues (1987) reported that several markers of decreased immunity are associated with marital dissatisfaction or loss of a spouse (the classic studies related to incidence of tuberculosis after loss of spouse). Another mechanism linking families to a patient's health is members' influence on adherence to medically prescribed regimens by way of general support, compliance, collaboration in therapeutic plans, and interactions with caregivers (Coppetelli & Orleans, 1985; Doherty & Campbell, 1988; Trevino, Young, Groff, & Jono, 1990; Venters, Jacobs, Luepker, Malman, & Gillum, 1984).

Work by Larry Fisher (Fisher et al., 1998; Fisher, Term, & Ransom, 1990) has advanced our understanding of how to efficiently assess families in health care settings. Fisher and associates (1998, 2000) proposed four reasons why a patient's family should be considered critical to improving a patient's health. First, most disease management takes place in the home. Second, the family is the source of a person's most influential intimate relationships. Third, family members often simultaneously undertake new or changed health behaviors (e.g., diet, exercise, health monitoring) along with the designated patient, or such family members have partial responsibility for the patient's target behavior (for example, shopping and preparing meals are instrumental in long-term dietary changes). Fourth, the family influences a patient's behavior through cultural practices and health belief systems. For example, Fisher and colleagues (2000) demonstrated that while family coherence is associated with glycemic control in diabetic patients, family coherence was not as important in the health outcomes of Hispanic patients.

Lisa Berkman has been a leader in documenting the negative impact that a lack of social support has on a variety of health outcomes (1995, 2000; Berkman, Leo-Summers, & Horowitz, 1992). Sheldon Cohen's work has demonstrated that the increased clinical symptoms of influenza that result from a withdrawal of social support are a direct outcome of compromised immune defenses (for review, see Cohen & Under-wood, 2000). Teresa Seeman and her colleagues (Seeman, 2000; Seeman, Lusignolo, Albert, & Berkman, 2001; Seeman. & McEwan, 1996; Seeman, Singer, Ryff, Dienberg-Love, & Levy-Storms, 2002) as well as others (Kiecolt-Glaser & Newton, 2001) have demonstrated that emotional support, as compared to instrumental support, is predictive of allostatic load, a measure of overall propensity to develop disease and illness as we age.

The quality of one's marital relationship, a specific measure of social support, has received significant attention in the past decade. While married adults have frequently been shown to have lower mortality and morbidity at various time points than single adults (Burman & Margolin, 1992; KiecoltGlaser & Newton, 2001), benefits of being married may be greater for men, while positive marital quality appears most predictive of health for women (Berkman et al., 1992; Coyne et al., 2001; Martikalnen & Valkonen, 1996; Orth-Gomer et al., 2000). Overall, the relationship between negative or hostile family relationships and illness is stronger than the relationship between positive family relationships and good health. For example, low scores on measures of satisfaction with one's family members are associated with poor outcomes for smoking cessation (Mermelstein, Lichtenstein, & McIntyre, 1983) as well as poorer diabetic control (Klausner, Koenigsberg, Skolnick, & Chung, 1995). In a study examining spousal support, Weihs (2Q02) found that breast cancer patients who were not satisfied in their marital relationships were four times more likely to have a recurrence of breast cancer than those who were satisfied.

In today's primary care offices chronic illness has become commonplace. In such circumstances much of the burden of care is transferred to the patient's home environment. Several social and economic forces have led to decreased availability of health care personnel and services, thus resulting in increased need for patients and their families to provide supplementary health care services as well as to encourage patients more often to engage in self-management behaviors (Ho, Marger, Beart, Yip, & Shekelle, 1997; Piette & Mah, 1997):

The goals of family-focused interventions for chronic disease include helping families manage the stresses as a team, mobilizing natural support systems (i.e., extended family, church community), coping with losses, reorganizing the family to ensure optimal patient care, and often coordinating and performing actual physical care. How these goals are achieved can vary from family to family. It is possible for a family to be too empathetic or too involved in the patient's coping. In addition, moving too quickly to solve problems, criticizing the member's choices, or catastrophizing may also be detrimental. However, moderated empathy at the appropriate time, humor, self-disclosure, and supportive behaviors can help family members cope with serious illnesses (Berg & Upchurch, 2003). The initial steps of such family-focused interventions would include some assessment strategy such as that described by Larry Fisher (Fisher et al., 1998; Fisher et al., 1990).

Another area being studied involves situations where family members are directly involved in health interventions. Some studies have targeted the caregivers of patients whereas others have focused on inclusion of other family members in the treatment of the primary patient. Most studies have reported that benefits to caregiver or patient tend to arise in those situations where the individual's disease is moderately or significantly advanced. Patients with milder forms of disease tend not to be included to the same degree in most studies, or minimal effects are reported in these less disabled or non-terminal patient populations.


Parents of Sick Children. Chronic family conflict and low cohesion have been associated with poor diabetic control (Anderson & Kornblum, 1984; Minuchin et al., 1975). Bernard-Bollmn, Stachenko, Bonin, Charette, and Rousseau (1995) reviewed 11 studies related to family functioning and childhood asthma. While effect sizes were small, such studies found interventions to be most effective for children with most severe asthma. Panton and Barley (2002), after their review of studies examining the impact of family therapy as an adjunct to medication for children with asthma, concluded that significant benefits are seen episodically at best; A review by Mendenhall (2002) concluded that while family education and support improve patient outcomes in cystic fibrosis and cancer, many such interventions were time-intensive and may not be easily implemented in busy primary care settings.

Caregivers of Patients With Chronic Illness. Interventions that are more intense and effortful than support groups have shown some benefit to caregivers. Skills training, such as that reported. by Mittleman, Ferris, Shulman, Steinberg, and Levin (1996) in the treatment of Alzheimer's disease, showed that six individual and family sessions in addition to a support group intervention over a four month period was most helpful in prolonging the time caregivers were able to care for patients in the early and middle stages of the disease. Caregivers were also less depressed and physically healthier, which led to the conclusion that better health care might be delivered to the patient (Toseland et al., 2001). Sorenson, Pinquart, and Duberstein (2002) conducted a meta-analysis concluding that the effects of interventions were least encouraging when interventions were directed toward the caregiver. Documentation of an impact on patients, as is often reported in the literature of family interventions in childhood disease, is absent when looking at elderly patients with deteriorating disease.

Spouse Involvement

Another way families are addressed as supportive change agents is by having patients' spouses engage in treatment activities with the patient. One example of enhancing the impact of a dietary change program by including spouses in treatment was reported by Wing, Marcus, Epstein, and Jawad (1991). Half the patients were treated as a group in a 20-week behavioral weight control program without their spouses attending, while spouses in the other half were treated together in an identical group intervention with their spouse as part of the group (all patients and spouses in the study were obese). While the amount of weight loss was similar in both groups immediately after the program, an interesting interaction effect was seen at one-year follow-up. Women did better when treated with spouses whereas men did better when going through the program without their spouses. This highlights the need to identify patient and family characteristics that may predict greatest benefit. Law and Crane (2000) recently summarized the cost-offset associated with these types of interventions.

Points of Contact
Doherty and Baird (1986), and more recently McDaniel, Hepworth, and Doherty (1992), identified five levels at which the physician may think about and interact with families. The first level is where there is minimal emphasis on the family. Level two involves communicating medical information to the patient's family members. Level three is characterized by meeting with family members, responding to their emotional needs, and facilitating referrals to mental health professionals when appropriate. Level four involves brief and limited assessment and intervention with a patient and family, encouraging problem-solving and developing specific skills that may enhance the patient's well-being. The fifth and final level involves conducting what is more often understood as family therapy, discussing issues tangentially related to the patient's medical condition and treatment. This early work has helped to clarify that in a busy primary care setting, engagement at intermediate levels may be a realistic way in which the patient's social network can be harnessed for maximum health benefit.

There are different reasons why contact between patient and physician may occur. A health maintenance visit has the purpose of assessing risk, screening, and promoting health or changing behavior. Ideally, it would include a family history, social and sexual history, and a survey of health behaviors. A visit for a serious, acute medical condition would focus on obtaining key information and assisting "With immediate coping and care. For either type of visit, family members can provide additional valuable history and information.

When helping a patient to change in some way, every health care professional should keep in mind that the process of change should be consistent with how a person can maintain such behavior in a larger social context, such as within the family. That is, external reinforcement from a health professional for maintaining dietary changes is not likely to be maintained in a home environment where such reinforcements may not be viable. Thus, suggested behaviors and sources of motivation should consider whether family members may be able to reinforce such motivation and, specifically, which family members might be both available and willing to take on such assignments.

Trying to manage chronic medical conditions, as well as minimizing the emotional impact of such conditions, can be frustrating for the primary care provider. However, once aware of the power of the family in the patient's life, the care provider can begin to leverage the supportive and curative potential of the family.

Rolland (1984, 1994) has identified the following disease variables in his typology describing the family's potential responses to the course of chronic disease: onset, course, outcome, and degree of incapacitation. Onset of illness refers to whether it is acute, like stroke, or gradual, like Alzheimer's disease. A family will likely respond to an acute illness differently than to a gradual onset illness. For example, an acute illness will quickly mobilize the family and force them to create and implement crisis management skills. This rapid change will be handled better by some families. The course of a chronic disease can be progressive (Type 1 diabetes), constant (spinal cord injury), or relapsing-episodic (asthma). Relapsing illnesses create tremendous unpredictability in families. Further, they demand flexibility in the family structure due to the transitions between crisis and non-crisis periods and ongoing worry about when the next crisis will take place. The illness outcome refers to a continuum of whether it will shorten one's life span or likely cause the death of a patient. Some illnesses are non-fatal, such as arthritis, whereas others are fatal, such as Huntington's disease. Another intermediate category refers both to illnesses that shorten the life span and those with the possibility of sudden death. Families coping with life-threatening illnesses experience anticipatory grief and the intense emotions of pulling the ill member closer for more intimacy and preparing themselves for the painful process of letting go of the ill member. Incapacitation refers to the degree of a patient's disability: incapacitating (Alzheimer's disease) or non-incapacitating (early lung cancer).

Developmental Perspectives
Family Transitions. According to Rolland (1994), when one considers the interface among the type of illness, the time phase of the illness, and the family's developmental state, one can begin to appreciate the unique and complex effects of illness on a family. Using Combrinck-Graham's (1985) Family Life Spiral as a backdrop, Rolland states that families naturally oscillate through times of greater closeness (centripetal periods), such as the birth of a new baby, and times' of greater distance (centrifugal periods), such as a child leaving home following adolescence. Centripetal periods are characterized by greater family cohesion and greater focus on internal family life. Centrifugal periods display a loosening"' of family boundaries, allowing individual family members to pursue goals and interactions with the extra-familial environment.

Similar to the addition of a new family member, the onset of illness generally has a centripetal pull on families. An illness that emerges during a centripetal period may prolong this period or result in a family getting stuck in this phase of development. When an illness strikes during a centrifugal period, it can interrupt a family's natural developmental progression and force family members to redirect their attention back to the family. A common example is an adolescent remaining at home beyond the time she originally expected to leave in order to help care for an ill parent.

A situation of crisis can also put a patient in a very vulnerable position, but the stress experienced during this time can raise the patient's level of awareness, leaving him or her more open to change. On the other hand, there is often a tendency in crisis to revert to old response patterns that are most ingrained for a given individual or family. The difficulty in predicting which direction a family or family member will take in such a situation (i.e., greater awareness vs. old patterns), be it a chronic stressor or a chronic illness, points to the importance of assessment of the factors known to predict family coping as well as a history of this family during previous stressful developmental changes.

Sawa (1985) developed an elegant, brief, yet comprehensive model of assessment. He argued to go beyond the initial inquiry by the physician (i.e., "How are things going within the family?" "What concerns at home are coming up regularly?" "Tell me what enjoyable things the family does together?"). Sawa proposed the best snapshot of family functioning emerges by asking a series of five questions. These questions appear to be largely based on Smilkstein's earlier work on the family APGAR (Smilkstein, 1978, 1980; Smilkstein, Ashworth, & Montano, 1982). Sawa named five elements to assess family functioning: Adaptation, Partnership, Growth, Affection, and Resolve. Sawa (1985) also described a few principles that are the foundation of such an assessment. One is that the focus of any interaction with the family should be on the present, not on past events or relationships. A second principle is that responsibility for change is squarely placed on each family member and is not the responsibility of the health care provider. Another principle is that how the family interacts in the physician's office is a fairly accurate representation of how they interact outside the office, and that attending to the process of communication and not just the content conveys a lot of information.

Sawa's work also contains several domains of family functioning that the practitioner may want to further assess, depending on resources and time available. These include (1) how connected the family members are to each other, their family of origin, and to the community; (2) where the family is in a developmental cycle (newlyweds, childrearing, divorce, retirement); (3) their "internal" functions, including their communications and ability to support each other emotionally and functionally (e.g., childrearing, finances, housework); and (4) the physical and mental health of each family member.

One of the chronic stressors on patients and families is the presence of a chronic illness. Whether it involves decreased functioning, progressive disability, instability of emotional well-being, or medical management that can be effortful and time-consuming, chronic illness challenges the resources of even the healthiest and most well-functioning families. It is the context of chronic disease management that presents perhaps the best opportunity for the primary care physician to engage the patient's family as an ally in the health care plan. However, whether these challenges require a change in health behaviors, interpersonal relationships, or in lifestyle in general, knowing how ready the family is to change is crucial to connecting with them in a health-promoting manner.

Most often the change that occurs for a patient when. interacting with a health professional is unplanned and unwanted. Unlike when a person engages in a planned and positive change, unplanned change (i.e., a recent diagnosis of a chronic disease) is beyond the control of the patient and thus experienced as negative. Such an experience is likely to lead to resistance to change for patient or family, and empathizing with this difficulty of change while pointing to potential benefits of change may be an effective strategy or response.

Barriers to change may include institutional or instrumental barriers, though such overt obstacles (e.g., lack of financial resources, lack of behavioral skill) may be addressed directly and overcome to a certain extent. Social support targeted toward such changes or barriers to change can be a focus for patients who may be especially isolated, or in families where communication patterns exacerbate a patient's reluctance to change.

Intervention from the health provider can, take many forms. Serving as a change agent is one of them. A change agent is someone in the patient's life who will aid in enabling the patient to progress toward his or her goal. For instance, the change agent will address disruptive behaviors, create an environment to facilitate change, or map out steps in the change process that are reasonable to the client. Proper planning for change, often not in the skill set of patient or family, is a very important intervention that can be provided by the physician or clinic staff.
While behavioral modification strategies may be useful for changing or shaping discrete behaviors, they are often limited by lack of attention to affective or cognitive domains. Realistic limitations on environmental control and extrinsic rewards for motivation make purely behavioral interventions somewhat limited in effectiveness, though with cognitively impaired populations such strategies may be effective.

Stages of Change and Motivational Interviewing. When it is not a matter of skill development or directly changing the environment, motivation for change may be the most appropriate short-term target for inter-vention. If this is the case, a coalescing of two models of behavior change may prove most helpful: Stages of Change emanating from the trans-theoretical model (DiClemente and Prochaska, 1998; Prochaska & DiClemente, 1983; Prochaska, DiClemente, & Norcross, 1992), and Motivational Interviewing (Miller & Rollnick, 2002). From a family systems perspective, another consideration emerges. The health care provider must consider how to respond when different family members are at different stages of change. This can be especially problematic when the potential change involves high risks for the family. For example, a family may be considering chemotherapy, surgery, or alternative treatments for a parent'~' cancer. Each member: may have a different perspective and be at a different point in the stages of change model. Family dynamics such as power and control, hierarchy, boundaries, hidden agendas, and trust may all influence the process. In this instance, focused effort by a mental health professional is warranted, as a physician is unlikely to have the time or the skills to adequately address such complexity, but he or she should have the clinical acumen and the established practice habit to recognize the complexity of the situation and the need to seek consultation or referral for specific needs.

Providers should not ignore racial, ethnic and cultural differences should they exist. Such sensitivity has been shown to have an impact on patient satisfaction and a patient's willingness to report personal information. Alternatively, the patient's ethnicity has been shown to affect the physician's perception of the patient's problems, as was shown when minority women who complained of chest pain received a lower level of care. Certainly physicians should be taught to address any such discrepancies between themselves and their patient directly yet with sensitivity (Shi, Forrest, Von Schrader, & Ng, 2003).

Family Interventions. Physicians and medical therapists most often include families in the assessment and treatment process when it is a necessity, namely, when the patient cannot function alone. Another primary reason that families are included in treatment planning is that the individual patient is not the decision maker or he or she cannot perform the disease management behaviors (Weihs, Fisher, & Balrd, 2002). Depending on the illness, at least part of the responsibility and burden of the illness is given to the family members.

Examples of these "required" family-based treatments include coping with illnesses of young children, adolescents, and the elderly. Other examples include adult illnesses that limit the patient's ability to provide self-care, such as loss of mental function, cancer, or serious heart disease. High-risk family situations occur when the breadwinner or family caretaker is incapacitated and no longer able to perform his or her role. While the parent's health declines~ the children are also at risk because of the loss of parenting and financial support.
While most health experts theoretically understand that a decline in the health of one family member affects all family members, it is not unusual for these effects to be overlooked. In general, health care providers are looking to families to assume some of the burden and responsibility of the member's illness. They are not looking for ways to include the family's needs as part of the treatment plan.

Nevertheless, there has been some preliminary research looking at family-focused interventions for health problems. These interventions fall along a continuum of involvement. Weihs, Fisher, and Baird (2002) identify the different interventions and their goals:

  • Psycho-educational: the most common intervention. The goal is to increase understanding of the disease in hopes that understanding will help the family cope. Behavioral changes in the family's dally functioning are targeted.

  • Family Relationship Quality and Functioning: psycho-education and family relationship interventions. The goals of these interventions are to reduce social isolation, prevent the disease from consuming all the family resources, help the family cope with loss, promote communication and collaboration, improve empathy, deal with stigma, and help the family cope with conflict.

  • Family Therapy: The goals of family therapy are often varied depending on the illness. In general, the goal in family therapy when conducted primarily in a mental health care setting is often to help reduce the duration and impact of the illness on the family's well-being, whereas in a medical setting the goal is often to improve the actual functioning level so that the family can interact with the health care team in a more effective manner.

  • Reconfiguration of the Health Care Team: The goals of these interventions are to create health care providers who are more "family friendly" in their responses to the patient's needs. Health care workers are encouraged to consider the family's feelings and needs, not simply those of their patients.

While these interventions suggest lofty ideals, it will be easy for health care providers to continue overlooking family's needs and the impact of the illness on the family. The many competing demands on clinicians' time (e.g., managed care) may often allow little room for interventions beyond immediate treatment of the patient's physical problems, and family members often keep their needs to themselves and remain focused on the identified patient. To accurately assess the impact of an illness and offer effective family-based treatments, clinicians must be willing to expand their scope of care and have the needed skills and resources to expand.

Given the rediscovered "connections" among medical conditions, mental health, and social environment, the challenges of increasing chronic disease management, and an increasingly fragmented health care system with an increasingly diverse population, the challenges to primary care and family physicians may often appear overwhelming. They should not have to go it alone. In our opinions, a collaborative model of treatment that brings together all of the stakeholders, including patient, family, and health care providers, is essential to address the multitude of patient needs identified in a busy primary care practice.

There is a growing movement in health care that is committed to models of collaboration between physicians and therapists in assessing, planning, and providing patient care. These health professionals are attempting to repair both the fragmentation in health care services and the conceptual split between mind and body. In fact, there are several organizations and groups devoted to championing this model of care, especially in the United States, the United Kingdom, and Australia. Table 26.1 provides a partial list of organizations and their Web sites. Although there is much interest in the spirit of collaboration, there are continuing questions about how to collaborate with other health care professionals.

For mental health professionals, successful collaboration often demands a shift in attitude. Patterson, Peck, Heinrich, Bishoff, and Scherger (2002) summarize the differences in viewing oneself as a traditional mental health specialist versus a team member on a collaborative team. In general, the therapist relinquishes the role of expert in the mental health and emotions of a shared patient and instead embraces a more holistic view of the patient's problems, medical and mental health. In this model, the therapist acknowledges that all areas related to health are inextricably intertwined. Mental health professionals must appreciate the larger systems that surround their patient, rather than just the clinical interaction.

In our roles as educators, we have noticed that there is little attention given to collaboration. Instead, most students are busy learning the language, skills, and paradigm of their discipline. Doherty and Baird (1986) talk about this split in training when they say that they were taught to treat "body-less minds" while their physician colleagues were taught to treat "mind-less bodies." In addition to this idea of collaborating on both mind and body, medical and mental health professionals must learn to collaborate with the family, an often under-used ally in maximizing the health of the patient. To successfully collaborate, health care professionals will have to relinquish some ideas they were taught in training and embrace new ideas and skills.

The UCSD/USD Collaborative Care Experience

At the University of California at San Diego (UCSD) Division of Family Medicine, we have developed a program in collaboration with faculty at the University of San Diego that involves training our physicians
Table 26.1 Groups supporting collaboration among different health professions

Australian Mental Health Branch of Health Services
Collaborative Family Healthcare Association
Society for Behavioral Medicine
Counseling in Primary Care Trust
International Society for Behavioral Medicine
WHO Guide to Mental Health in Primary Care
Integrated Primary Care
The Cummings Foundation

in both the attitudes and skills of working better with families and mental health professionals. In this program, mental health professionals share office space with physicians and work side by side with them. This a,l1ows all professional groups to provide mutually beneficial real-time consultation services to each other, and to have frequent meetings about specific patients, their families, and the collaborative process itself. Trainees from a variety of disciplines are involved, setting an example for how to provide such collaborative care in the future. In addition to the collaboration of various service-oriented disciplines, researchers are integral to documenting -the experiences and outcomes of patients and professionals alike.

Shared medical decision making and choice for families is greater than at any point in history. Questioning the physician, second opinions, and exploring therapeutic options are becoming new standards. High degrees of patient involvement, control, information seeking, and expression of emotions (by both patient and provider) correlate with positive clinical outcomes (e.g., Golin, DiMatteo, & Gelberg, 1996).

Today's primary care physicians must be trained to participate in all levels of care and should receive training experience with family therapists and clinicians of other disciplines so they may know their roles and functions, indications for consultation, and how to participate in ongoing collaborative care of their mutual patients and families. Similarly, mental health professionals must be adequately familiar with the medical environment to provide services where they are most likely to be accessed and thus deliver the greatest good to the community at large. This review has attempted to introduce the evidence encouraging us all to collaborate more, not only with other professionals, but with patients' families with the goal to serve the greatest good.

This article was previously published as Sieber WJ, Edwards TM, Kallenberg GA, Patterson JE (2004). Maximizing patients’ health through engagement with families. In R Crane (Ed.) Families & Health, Sage : Thousand Oaks, CA.

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