Deborah S. Main, PhD

Over the past decade health care has experienced rapid and sometimes volatile change that has affected the quality of patient care.¹ Changes in the structure and financing of health care have compromised family practice’s ability to maintain its core values of comprehensive, coordinated, and continuous care in the context of the family.² For example, the Direct Observation of Primary Care (DOPC) study found that one fourth of patients in participating northeastern Ohio practices were forced to change health care providers during a 2-year period.³ These patients reported less coordination of care, decreased continuity with their new provider, and less satisfactory interpersonal communication.

Reports from the DOPC study also found, however, that the family remains an important focus in patient care despite these disruptions in continuity and coordination. Family issues were discussed in more than 70% of patient encounters, accounting for 10% of visit time.⁴ Patients were accompanied by family members in one third of outpatient visits, providing opportunities for family involvement and even care for 18% of these "non-patients."⁵ These findings were consistent with those of a recent Canadian study that looked at the role of those people who accompany patients into the medical examination⁶ and a qualitative study of the ways the family was integrated into routine patient care.⁷

Although these and other studies confirm that the family is a salient feature in family practice, it is not known how knowledge of the family context affects the process of patient care. Data from the Prevention and Competing Demands in Primary Care Study (PCDPC) were used to answer this question through observation of visits in 18 family practices in Nebraska.

Methods

We used patient encounter data from the PCDPC practice study, an in-depth observational examination of the organizational and clinical structures and process of community-based family practices. Each of the 18 purposefully selected practices was studied using a multimethod comparative case study design that involved extensive direct observation of clinical encounters and office systems by field researchers who spent 4 weeks or more in each practice. Field researchers directly observed and dictated descriptions of approximately 30 patient encounters with each of the more than 50 clinicians and audited medical records of each of these patients. Detailed descriptive field notes documented day-to-day practice operations. Individual depth interviews with each clinician, many of the office staff, and members of the community were used to obtain different perspectives on each practice. Details of the sampling and data collection are available elsewhere in this issue.⁸

We analyzed 1600 of the 1637 outpatient encounters to determine how the family had an influence on patient care (37 visits had insufficient data for effective analysis). Each encounter was coded by one of the co-authors (S.H.) as a family-oriented visit if: (1) the patient’s family member was present in the examination room or (2) medical or health information about the patient’s family was discussed and/or addressed during the visit. Another author (D.S.M.) read each encounter using an editing organizing style⁹ by writing brief jottings about each encounter that described how the family had an impact on these medical encounters. Finally, 2 authors (S.H., D.S.M.) jointly examined these jottings to identify an organizational framework and to categorize all family-oriented care visits. The frequency of family-oriented visits was determined using SPSS for Windows (SPSS, Inc; Chicago, Ill).¹⁰ Encounter field notes were used to develop case examples to illustrate the ways the family context affected the process of patient care.

Results

Of the 1600 outpatient encounters that were analyzed, 923 (58%) were family-oriented in some way. In a total of 560 visits (35%), patients were accompanied into the examination room by at least one other person (usually a family member), while 363 (23% of total visits) included mention or discussion of the patient’s family in some way when the patients were by themselves. A large percentage of people who accompanied patients were family members (96%), indicating that such encounters were indeed “family visits.” Individuals accompanying patients into these family visits were much more likely to be women (73%), with this high percentage largely due to the high representation of mothers present during their children’s health care visits. For adult family visits, wives (29%), adult daughters (19%), and husbands (19%) most frequently accompanied patients into the examination room.

The family frequently came up in the medical visit when clinicians took patient health histories. Clinicians asked their adult patients about family history of heart disease, cancer, and diabetes, and sometimes use of alcohol, tobacco, and other drugs. Parents accompanying their children were frequently asked about their own history of disease, or they offered such information to help clinicians make a diagnosis or determine treatment for their children. For some patients, knowledge of their own family history led to their visit in the first place. For example, one patient came in to get a breast lump examined in part because she had a strong family history of breast cancer (her mother died of breast cancer). The clinician and patient explored her risk for breast cancer, and the patient was scheduled for a mammogram.

Although taking a patient’s health history was a routine part of patient care, some of these discussions led to visible changes in health care delivery. For example, during the history-taking for a 31-year-old man presenting with a constant dry cough that had lasted for 7 weeks, the physician discovered that the patient’s father and brother had died of lung cancer and his mother of a heart attack. The physician told the patient he wanted to treat him a little more aggressively because of this family history. Although this change in treatment may not have been necessary, it reflects how family-related concerns can affect patient management.

Among adults, women were more likely to be accompanied, often by their young children. When other family members accompanied adult men into the medical encounter, they were usually wives and sometimes mothers. Visits by adults older than 75 years were characterized by several factors: The patients were more likely to be men than any other visit type, and family involvement was greater than for any other adult category. Elderly patients were most likely to be accompanied by wives and daughters, many of whom served as primary caretakers. These visits were marked by frequent questioning and an exchange of information, and often care collaboration between providers and family members.

One of the most common patterns was for mothers and fathers to give and receive information about their children’s health, illness, and social context. Clinicians relied on parents to provide information about their child’s health condition, contextual information about family health history, or other familial, work, school or other environmental factors that may influence health and disease. These family encounters provided many opportunities for educating parents and providers about the important health issues of their children. Parental involvement progressively decreased through adolescence Figure 1

Qualitative analyses of patient visits identified categories of the different ways a family perspective made a difference in these patient encounters. Although many of the visits fell into a general category of family history of illness that did not appear to affect subsequent decision, 6 nonexclusive categories were identified in which a family-oriented perspective affected patient care: (1) using family social context to illuminate patient disease, illness, and health; (2) using family to discover the source of an illness; (3) discussing and managing the health and illness of family members; (4) family concern for patient’s health; (5) using the family as a care resource and care collaborator; and (6) family member receives unscheduled care. The following sections provide case examples of different ways the presence and/or incorporation of the family in patient visits can make a difference in the processes of care.

Using Family Context to Illuminate Patient Disease, Illness, and Health

In addition to discussions about the family and health history, the family social context provided important information for understanding and improving patient care. These discussions ranged from inquiring about or discussing the home and familial relationships as sources of support or stress, talking about the effects of a recent death or divorce on patient health and well-being, or determining family dynamics as they relate to a patients diagnosis or reason for visit. Patients and accompanying family members commonly initiated these discussions, but clinicians also asked about the patient’s social context, particularly when he or she knew the family. As illustrated in the following example, this contextual information can help to illuminate the patient’s “real” reason for the visit, guiding the clinician toward more productive discussions and effective patient care:

A 34-year-old man with a history of heart problems and very high cholesterol recently had stopped taking his medications. The clinician wanted to explore this further. He knew that the patient’s daughter had been killed in a car accident, so he initiated a conversation about the family. The patient admitted that he had quit taking his medications when this tragedy hit. “I just sort of gave up,” he said. “I know that I’m depressed over this.” The clinician took this opportunity to acknowledge the patient’s depression, and they talked about beginning antidepressants. He decided that medications might hamper the grieving process but encouraged the patient to talk. The clinician let the patient know that he was available any time of day.

Using Family to Discover the Source of an Illness

Clinicians frequently asked questions about the family to determine the source of a patient’s illness, for example, “Who else is sick in the family?” Patients were asked about their exposure to other family members (eg, passive smoke) and were also reminded of how they could spread disease to their families. These conversations were particularly productive when clinicians knew the entire family and both patients and clinicians could use the visit to problem-solve ways of improving the health of both patients and their family members:

A mother brought her 5-month-old infant in with complaints of a cough and runny nose. The clinician diagnosed the patient with asthmatic bronchitis and asked the mom if she smoked. The mom indicated that both she and the baby sitter smoke but not around the baby. The clinician took this opportunity to educate mom on how smoke permeates both clothing and the air. She stressed to mom that her smoking will aggravate the baby’s condition and that the baby will likely have more and longer episodes if she continued to smoke.

In this encounter, the clinician took advantage of a teachable moment to educate the parent on how her smoking was affecting her child’s health but also engaged the mother as a patient by spending time counseling her on smoking cessation.

Discussing and Managing the Health and Illness of Other Family Members

Patients often talked about the health of family members. Sometimes this came up because clinicians were also caring for other members of the patient’s family, and they wanted to know how they were doing (eg, “Is everyone else in the family well?”). In other patient encounters this arose because the patient was the primary caretaker of another family member and wanted information or support. In the following case illustration, the clinician makes recommendations that involve the husband and treats the family rather than just the patient:

A 53-year-old woman is visiting for a health maintenance visit. The patient is a breast cancer survivor who recently had a mastectomy and is currently on chemotherapy. The patient asks the clinician if she has had any experiences with women having breast cancer whom have had husbands lose interest in sex. The patient then confides that her husband has never said anything, but she senses a difference in him; he has absolutely no desire to have any sexual contact with her. The clinician listens and is very sympathetic. She encourages the patient to seek counseling for both of them and talks with her about talking with her husband about this sensitive issue.

Family Concern for a Patient’s Health

Although patients visited their physicians for a variety of reasons, some came in to allay the fears or pestering of family members. The initiation of these visits took different forms. In most cases, patients made appointments as a result of concern expressed or pressure from a family member. In other cases, the visiting patient would ask the clinician to pressure a family member to seek care or would go ahead and schedule an appointment for him or her. These “reluctant patients” may not have otherwise come in. Although women family members most often encouraged these visits, there were also examples of concerned husbands and adult sons who prompted their family members to seek care. In the following illustration, the clinician had been prompted by the patient’s wife to talk about a particular health issue that the patient would not have otherwise brought up:

A 56-year-old man came in to review his medications for high blood pressure. The clinician asked the patient how he was doing and the patient responded, “Everything is fine.” The clinician responded, “That’s not what you wife says. She says you’re having problems with your legs.” They spent most of the visit talking about the patient’s leg problems.

Using the Family as Care Resource and Care Collaborator

In some encounters clinicians and patients discussed the roles of family members in helping patients improve health and health outcomes. Family members became care resources in a variety of ways. In some instances, the clinician asked about the possibility of involving other members of the family in care management; sometimes the patient suggested that a family member should take this role. Some family members who accompanied patients asserted themselves during visits. For example, many parents who accompanied their young children into visits asked questions and offered advice or suggestions. Clinicians also involved family members as care collaborators, asking questions and involving them in decision making about health and health care.

An adult daughter brought in her 90-year-old mother because her behavior was becoming more unpredictable and erratic. During her most recent visit to her mother’s nursing home she had witnessed her running around with no clothes. That incident, along with a recent series of falls, caused the daughter a great deal of concern. “I know when my mother acts like this, this is not really my mother,” she said. “This is not the person I know.” During most of the encounter the daughter and clinician talked about the dosage and side effects of each of her mother’s medications, gradually eliminating some of the drugs that seemed unnecessary. The clinician commented to the daughter, “We need to get some order in this.” The daughter agreed.

Family Member Receives Unscheduled Care

Sometimes the family member actually became a patient. This happened more frequently when family members accompanied the patient but also when the patient visited alone. Clinicians, patients, and family members all initiated this unplanned care. Clinicians would specifically ask about a family member who was also a patient - and would even give the patient a drug sample to take home to a spouse or child. Often, patients came in requesting medication refills or other advice about a family member’s health problem. Some family members who accompanied patients took advantage of these visits to ask about a particular health problem, to get a free sample, or to refill a medication. In the following example, the clinician saw both husband and wife, and the husband took advantage of the encounter to talk with the clinician about his own health issue and to schedule an appointment:

A husband accompanied his 79-year-old wife to her medical visit; she had shortness of breath and weakness. Near the end of the visit the husband asked about the results of his prostate-specific antigen test. Because the clinician kept family charts, the patient’s husband was able to get his results. The patient’s husband then asked the clinician if he needed to make an appointment. The clinician looked in the chart and responded, “Well, you need to have a complete physical. Make an appointment for that.”

Sometimes the accompanying person gets direct care during the visit as in the following illustration:

A mother brought her baby in for her 1-week check-up. The physician asked the mother how she was feeling. The mother mentioned that she felt a “burning sensation” after urination. After asking the mother a few specific questions, the clinician instructed mom to jump onto the table for a brief examination. The mother was diagnosed with a vaginal tear and was instructed on how to care for it.

Discussion

This paper presents a data-driven typology that shows the multiple ways in which patients’ families influence the outpatient visit in family practice. As found in previous research, family-oriented care frequently occurred through the collection or discussion of family history of illness.^4,11 Information on family history and family context frequently led to important changes in decision making and treatment for both the patient and the family. With the renewed emphasis on family history as a method of identifying patients at increased genetic risk,¹² the family history-taking skills of family physicians should become increasingly important in educating patients and their families about genetic risk.

Patients also shared important contextual information about how family relationships and family stresses were affecting their own health. They talked about the health and illness of family members that had often influenced the patient’s reason for a visit. These conversations also helped to uncover the stress-related illness, anxiety, and depression of patients and family members, sometimes representing the “real” reason for a visit. These family-oriented exchanges have been shown to positively affect the physician-patient relationship and have an impact on patient satisfaction and perceptions of quality of care.^13-15

Limitations

Despite the uniqueness of the data and the grounded analysis approach, the findings must be interpreted within the context of the study limitations. Because these data were collected by field researchers who were unaware that family context would be a focus of the analysis, it is possible that there were other patient and physician behaviors related to family issues that were not recorded. The data were sufficiently rich, however, to easily assess the effect of family knowledge on physician and patient decision making. Any unrecorded behaviors might add to but should not substantially change our conclusions. Since the patient population studied was limited to a single Midwestern state, it is possible that other populations with a different ethnic and/or racial mix might behave differently. Future research of this type should attempt to include such populations.

Conclusions

Our study demonstrates that physician knowledge of family context gained from the care of multiple family members over time improves the quality of medical decision making and may account in part for the better outcomes that have been shown to result from continuous and comprehensive care.^15-18 The current health care environment, driven by managed care does not value or encourage the long-term relationships between physicians and family members that are necessary to develop the kind of family knowledge and connectedness shown by the physicians we studied. Further research in this area should focus on outcomes in patients whose physicians are informed by family context. Such data may help convince health policymakers and legislators of the importance of continuity of physician-family relationships in the delivery of high-quality primary health care.

Acknowledgments

This study was supported by a grant from the Agency for Healthcare Research and Quality (R01 HS08776) and a Family Practice Research Center grant from the American Academy of Family Physicians. We are grateful to the physicians, staff, and patients from the 18 practices without whose participation our study would not have been possible. We also wish to thank Drs Kurt C. Stange and John G. Scott who provided helpful comments on earlier drafts of this paper. Dr Crabtree is associated with the Center for Research in Family Practice and Primary Care, Cleveland, New Brunswick, Allentown, and San Antonio.

Over the past decade health care has experienced rapid and sometimes volatile change that has affected the quality of patient care.¹ Changes in the structure and financing of health care have compromised family practice’s ability to maintain its core values of comprehensive, coordinated, and continuous care in the context of the family.² For example, the Direct Observation of Primary Care (DOPC) study found that one fourth of patients in participating northeastern Ohio practices were forced to change health care providers during a 2-year period.³ These patients reported less coordination of care, decreased continuity with their new provider, and less satisfactory interpersonal communication.

Reports from the DOPC study also found, however, that the family remains an important focus in patient care despite these disruptions in continuity and coordination. Family issues were discussed in more than 70% of patient encounters, accounting for 10% of visit time.⁴ Patients were accompanied by family members in one third of outpatient visits, providing opportunities for family involvement and even care for 18% of these "non-patients."⁵ These findings were consistent with those of a recent Canadian study that looked at the role of those people who accompany patients into the medical examination⁶ and a qualitative study of the ways the family was integrated into routine patient care.⁷

Although these and other studies confirm that the family is a salient feature in family practice, it is not known how knowledge of the family context affects the process of patient care. Data from the Prevention and Competing Demands in Primary Care Study (PCDPC) were used to answer this question through observation of visits in 18 family practices in Nebraska.

Methods

We used patient encounter data from the PCDPC practice study, an in-depth observational examination of the organizational and clinical structures and process of community-based family practices. Each of the 18 purposefully selected practices was studied using a multimethod comparative case study design that involved extensive direct observation of clinical encounters and office systems by field researchers who spent 4 weeks or more in each practice. Field researchers directly observed and dictated descriptions of approximately 30 patient encounters with each of the more than 50 clinicians and audited medical records of each of these patients. Detailed descriptive field notes documented day-to-day practice operations. Individual depth interviews with each clinician, many of the office staff, and members of the community were used to obtain different perspectives on each practice. Details of the sampling and data collection are available elsewhere in this issue.⁸

We analyzed 1600 of the 1637 outpatient encounters to determine how the family had an influence on patient care (37 visits had insufficient data for effective analysis). Each encounter was coded by one of the co-authors (S.H.) as a family-oriented visit if: (1) the patient’s family member was present in the examination room or (2) medical or health information about the patient’s family was discussed and/or addressed during the visit. Another author (D.S.M.) read each encounter using an editing organizing style⁹ by writing brief jottings about each encounter that described how the family had an impact on these medical encounters. Finally, 2 authors (S.H., D.S.M.) jointly examined these jottings to identify an organizational framework and to categorize all family-oriented care visits. The frequency of family-oriented visits was determined using SPSS for Windows (SPSS, Inc; Chicago, Ill).¹⁰ Encounter field notes were used to develop case examples to illustrate the ways the family context affected the process of patient care.

Results

Of the 1600 outpatient encounters that were analyzed, 923 (58%) were family-oriented in some way. In a total of 560 visits (35%), patients were accompanied into the examination room by at least one other person (usually a family member), while 363 (23% of total visits) included mention or discussion of the patient’s family in some way when the patients were by themselves. A large percentage of people who accompanied patients were family members (96%), indicating that such encounters were indeed “family visits.” Individuals accompanying patients into these family visits were much more likely to be women (73%), with this high percentage largely due to the high representation of mothers present during their children’s health care visits. For adult family visits, wives (29%), adult daughters (19%), and husbands (19%) most frequently accompanied patients into the examination room.

The family frequently came up in the medical visit when clinicians took patient health histories. Clinicians asked their adult patients about family history of heart disease, cancer, and diabetes, and sometimes use of alcohol, tobacco, and other drugs. Parents accompanying their children were frequently asked about their own history of disease, or they offered such information to help clinicians make a diagnosis or determine treatment for their children. For some patients, knowledge of their own family history led to their visit in the first place. For example, one patient came in to get a breast lump examined in part because she had a strong family history of breast cancer (her mother died of breast cancer). The clinician and patient explored her risk for breast cancer, and the patient was scheduled for a mammogram.

Although taking a patient’s health history was a routine part of patient care, some of these discussions led to visible changes in health care delivery. For example, during the history-taking for a 31-year-old man presenting with a constant dry cough that had lasted for 7 weeks, the physician discovered that the patient’s father and brother had died of lung cancer and his mother of a heart attack. The physician told the patient he wanted to treat him a little more aggressively because of this family history. Although this change in treatment may not have been necessary, it reflects how family-related concerns can affect patient management.

Among adults, women were more likely to be accompanied, often by their young children. When other family members accompanied adult men into the medical encounter, they were usually wives and sometimes mothers. Visits by adults older than 75 years were characterized by several factors: The patients were more likely to be men than any other visit type, and family involvement was greater than for any other adult category. Elderly patients were most likely to be accompanied by wives and daughters, many of whom served as primary caretakers. These visits were marked by frequent questioning and an exchange of information, and often care collaboration between providers and family members.

One of the most common patterns was for mothers and fathers to give and receive information about their children’s health, illness, and social context. Clinicians relied on parents to provide information about their child’s health condition, contextual information about family health history, or other familial, work, school or other environmental factors that may influence health and disease. These family encounters provided many opportunities for educating parents and providers about the important health issues of their children. Parental involvement progressively decreased through adolescence Figure 1

Qualitative analyses of patient visits identified categories of the different ways a family perspective made a difference in these patient encounters. Although many of the visits fell into a general category of family history of illness that did not appear to affect subsequent decision, 6 nonexclusive categories were identified in which a family-oriented perspective affected patient care: (1) using family social context to illuminate patient disease, illness, and health; (2) using family to discover the source of an illness; (3) discussing and managing the health and illness of family members; (4) family concern for patient’s health; (5) using the family as a care resource and care collaborator; and (6) family member receives unscheduled care. The following sections provide case examples of different ways the presence and/or incorporation of the family in patient visits can make a difference in the processes of care.

Using Family Context to Illuminate Patient Disease, Illness, and Health

In addition to discussions about the family and health history, the family social context provided important information for understanding and improving patient care. These discussions ranged from inquiring about or discussing the home and familial relationships as sources of support or stress, talking about the effects of a recent death or divorce on patient health and well-being, or determining family dynamics as they relate to a patients diagnosis or reason for visit. Patients and accompanying family members commonly initiated these discussions, but clinicians also asked about the patient’s social context, particularly when he or she knew the family. As illustrated in the following example, this contextual information can help to illuminate the patient’s “real” reason for the visit, guiding the clinician toward more productive discussions and effective patient care:

A 34-year-old man with a history of heart problems and very high cholesterol recently had stopped taking his medications. The clinician wanted to explore this further. He knew that the patient’s daughter had been killed in a car accident, so he initiated a conversation about the family. The patient admitted that he had quit taking his medications when this tragedy hit. “I just sort of gave up,” he said. “I know that I’m depressed over this.” The clinician took this opportunity to acknowledge the patient’s depression, and they talked about beginning antidepressants. He decided that medications might hamper the grieving process but encouraged the patient to talk. The clinician let the patient know that he was available any time of day.

Using Family to Discover the Source of an Illness

Clinicians frequently asked questions about the family to determine the source of a patient’s illness, for example, “Who else is sick in the family?” Patients were asked about their exposure to other family members (eg, passive smoke) and were also reminded of how they could spread disease to their families. These conversations were particularly productive when clinicians knew the entire family and both patients and clinicians could use the visit to problem-solve ways of improving the health of both patients and their family members:

A mother brought her 5-month-old infant in with complaints of a cough and runny nose. The clinician diagnosed the patient with asthmatic bronchitis and asked the mom if she smoked. The mom indicated that both she and the baby sitter smoke but not around the baby. The clinician took this opportunity to educate mom on how smoke permeates both clothing and the air. She stressed to mom that her smoking will aggravate the baby’s condition and that the baby will likely have more and longer episodes if she continued to smoke.

In this encounter, the clinician took advantage of a teachable moment to educate the parent on how her smoking was affecting her child’s health but also engaged the mother as a patient by spending time counseling her on smoking cessation.

Discussing and Managing the Health and Illness of Other Family Members

Patients often talked about the health of family members. Sometimes this came up because clinicians were also caring for other members of the patient’s family, and they wanted to know how they were doing (eg, “Is everyone else in the family well?”). In other patient encounters this arose because the patient was the primary caretaker of another family member and wanted information or support. In the following case illustration, the clinician makes recommendations that involve the husband and treats the family rather than just the patient:

A 53-year-old woman is visiting for a health maintenance visit. The patient is a breast cancer survivor who recently had a mastectomy and is currently on chemotherapy. The patient asks the clinician if she has had any experiences with women having breast cancer whom have had husbands lose interest in sex. The patient then confides that her husband has never said anything, but she senses a difference in him; he has absolutely no desire to have any sexual contact with her. The clinician listens and is very sympathetic. She encourages the patient to seek counseling for both of them and talks with her about talking with her husband about this sensitive issue.

Family Concern for a Patient’s Health

Although patients visited their physicians for a variety of reasons, some came in to allay the fears or pestering of family members. The initiation of these visits took different forms. In most cases, patients made appointments as a result of concern expressed or pressure from a family member. In other cases, the visiting patient would ask the clinician to pressure a family member to seek care or would go ahead and schedule an appointment for him or her. These “reluctant patients” may not have otherwise come in. Although women family members most often encouraged these visits, there were also examples of concerned husbands and adult sons who prompted their family members to seek care. In the following illustration, the clinician had been prompted by the patient’s wife to talk about a particular health issue that the patient would not have otherwise brought up:

A 56-year-old man came in to review his medications for high blood pressure. The clinician asked the patient how he was doing and the patient responded, “Everything is fine.” The clinician responded, “That’s not what you wife says. She says you’re having problems with your legs.” They spent most of the visit talking about the patient’s leg problems.

Using the Family as Care Resource and Care Collaborator

In some encounters clinicians and patients discussed the roles of family members in helping patients improve health and health outcomes. Family members became care resources in a variety of ways. In some instances, the clinician asked about the possibility of involving other members of the family in care management; sometimes the patient suggested that a family member should take this role. Some family members who accompanied patients asserted themselves during visits. For example, many parents who accompanied their young children into visits asked questions and offered advice or suggestions. Clinicians also involved family members as care collaborators, asking questions and involving them in decision making about health and health care.

An adult daughter brought in her 90-year-old mother because her behavior was becoming more unpredictable and erratic. During her most recent visit to her mother’s nursing home she had witnessed her running around with no clothes. That incident, along with a recent series of falls, caused the daughter a great deal of concern. “I know when my mother acts like this, this is not really my mother,” she said. “This is not the person I know.” During most of the encounter the daughter and clinician talked about the dosage and side effects of each of her mother’s medications, gradually eliminating some of the drugs that seemed unnecessary. The clinician commented to the daughter, “We need to get some order in this.” The daughter agreed.

Family Member Receives Unscheduled Care

Sometimes the family member actually became a patient. This happened more frequently when family members accompanied the patient but also when the patient visited alone. Clinicians, patients, and family members all initiated this unplanned care. Clinicians would specifically ask about a family member who was also a patient - and would even give the patient a drug sample to take home to a spouse or child. Often, patients came in requesting medication refills or other advice about a family member’s health problem. Some family members who accompanied patients took advantage of these visits to ask about a particular health problem, to get a free sample, or to refill a medication. In the following example, the clinician saw both husband and wife, and the husband took advantage of the encounter to talk with the clinician about his own health issue and to schedule an appointment:

A husband accompanied his 79-year-old wife to her medical visit; she had shortness of breath and weakness. Near the end of the visit the husband asked about the results of his prostate-specific antigen test. Because the clinician kept family charts, the patient’s husband was able to get his results. The patient’s husband then asked the clinician if he needed to make an appointment. The clinician looked in the chart and responded, “Well, you need to have a complete physical. Make an appointment for that.”

Sometimes the accompanying person gets direct care during the visit as in the following illustration:

A mother brought her baby in for her 1-week check-up. The physician asked the mother how she was feeling. The mother mentioned that she felt a “burning sensation” after urination. After asking the mother a few specific questions, the clinician instructed mom to jump onto the table for a brief examination. The mother was diagnosed with a vaginal tear and was instructed on how to care for it.

Discussion

This paper presents a data-driven typology that shows the multiple ways in which patients’ families influence the outpatient visit in family practice. As found in previous research, family-oriented care frequently occurred through the collection or discussion of family history of illness.^4,11 Information on family history and family context frequently led to important changes in decision making and treatment for both the patient and the family. With the renewed emphasis on family history as a method of identifying patients at increased genetic risk,¹² the family history-taking skills of family physicians should become increasingly important in educating patients and their families about genetic risk.

Patients also shared important contextual information about how family relationships and family stresses were affecting their own health. They talked about the health and illness of family members that had often influenced the patient’s reason for a visit. These conversations also helped to uncover the stress-related illness, anxiety, and depression of patients and family members, sometimes representing the “real” reason for a visit. These family-oriented exchanges have been shown to positively affect the physician-patient relationship and have an impact on patient satisfaction and perceptions of quality of care.^13-15

Limitations

Despite the uniqueness of the data and the grounded analysis approach, the findings must be interpreted within the context of the study limitations. Because these data were collected by field researchers who were unaware that family context would be a focus of the analysis, it is possible that there were other patient and physician behaviors related to family issues that were not recorded. The data were sufficiently rich, however, to easily assess the effect of family knowledge on physician and patient decision making. Any unrecorded behaviors might add to but should not substantially change our conclusions. Since the patient population studied was limited to a single Midwestern state, it is possible that other populations with a different ethnic and/or racial mix might behave differently. Future research of this type should attempt to include such populations.

Conclusions

Our study demonstrates that physician knowledge of family context gained from the care of multiple family members over time improves the quality of medical decision making and may account in part for the better outcomes that have been shown to result from continuous and comprehensive care.^15-18 The current health care environment, driven by managed care does not value or encourage the long-term relationships between physicians and family members that are necessary to develop the kind of family knowledge and connectedness shown by the physicians we studied. Further research in this area should focus on outcomes in patients whose physicians are informed by family context. Such data may help convince health policymakers and legislators of the importance of continuity of physician-family relationships in the delivery of high-quality primary health care.

Acknowledgments

This study was supported by a grant from the Agency for Healthcare Research and Quality (R01 HS08776) and a Family Practice Research Center grant from the American Academy of Family Physicians. We are grateful to the physicians, staff, and patients from the 18 practices without whose participation our study would not have been possible. We also wish to thank Drs Kurt C. Stange and John G. Scott who provided helpful comments on earlier drafts of this paper. Dr Crabtree is associated with the Center for Research in Family Practice and Primary Care, Cleveland, New Brunswick, Allentown, and San Antonio.

Over the past decade health care has experienced rapid and sometimes volatile change that has affected the quality of patient care.¹ Changes in the structure and financing of health care have compromised family practice’s ability to maintain its core values of comprehensive, coordinated, and continuous care in the context of the family.² For example, the Direct Observation of Primary Care (DOPC) study found that one fourth of patients in participating northeastern Ohio practices were forced to change health care providers during a 2-year period.³ These patients reported less coordination of care, decreased continuity with their new provider, and less satisfactory interpersonal communication.

Reports from the DOPC study also found, however, that the family remains an important focus in patient care despite these disruptions in continuity and coordination. Family issues were discussed in more than 70% of patient encounters, accounting for 10% of visit time.⁴ Patients were accompanied by family members in one third of outpatient visits, providing opportunities for family involvement and even care for 18% of these "non-patients."⁵ These findings were consistent with those of a recent Canadian study that looked at the role of those people who accompany patients into the medical examination⁶ and a qualitative study of the ways the family was integrated into routine patient care.⁷

Although these and other studies confirm that the family is a salient feature in family practice, it is not known how knowledge of the family context affects the process of patient care. Data from the Prevention and Competing Demands in Primary Care Study (PCDPC) were used to answer this question through observation of visits in 18 family practices in Nebraska.

Methods

We used patient encounter data from the PCDPC practice study, an in-depth observational examination of the organizational and clinical structures and process of community-based family practices. Each of the 18 purposefully selected practices was studied using a multimethod comparative case study design that involved extensive direct observation of clinical encounters and office systems by field researchers who spent 4 weeks or more in each practice. Field researchers directly observed and dictated descriptions of approximately 30 patient encounters with each of the more than 50 clinicians and audited medical records of each of these patients. Detailed descriptive field notes documented day-to-day practice operations. Individual depth interviews with each clinician, many of the office staff, and members of the community were used to obtain different perspectives on each practice. Details of the sampling and data collection are available elsewhere in this issue.⁸

We analyzed 1600 of the 1637 outpatient encounters to determine how the family had an influence on patient care (37 visits had insufficient data for effective analysis). Each encounter was coded by one of the co-authors (S.H.) as a family-oriented visit if: (1) the patient’s family member was present in the examination room or (2) medical or health information about the patient’s family was discussed and/or addressed during the visit. Another author (D.S.M.) read each encounter using an editing organizing style⁹ by writing brief jottings about each encounter that described how the family had an impact on these medical encounters. Finally, 2 authors (S.H., D.S.M.) jointly examined these jottings to identify an organizational framework and to categorize all family-oriented care visits. The frequency of family-oriented visits was determined using SPSS for Windows (SPSS, Inc; Chicago, Ill).¹⁰ Encounter field notes were used to develop case examples to illustrate the ways the family context affected the process of patient care.

Results

Of the 1600 outpatient encounters that were analyzed, 923 (58%) were family-oriented in some way. In a total of 560 visits (35%), patients were accompanied into the examination room by at least one other person (usually a family member), while 363 (23% of total visits) included mention or discussion of the patient’s family in some way when the patients were by themselves. A large percentage of people who accompanied patients were family members (96%), indicating that such encounters were indeed “family visits.” Individuals accompanying patients into these family visits were much more likely to be women (73%), with this high percentage largely due to the high representation of mothers present during their children’s health care visits. For adult family visits, wives (29%), adult daughters (19%), and husbands (19%) most frequently accompanied patients into the examination room.

The family frequently came up in the medical visit when clinicians took patient health histories. Clinicians asked their adult patients about family history of heart disease, cancer, and diabetes, and sometimes use of alcohol, tobacco, and other drugs. Parents accompanying their children were frequently asked about their own history of disease, or they offered such information to help clinicians make a diagnosis or determine treatment for their children. For some patients, knowledge of their own family history led to their visit in the first place. For example, one patient came in to get a breast lump examined in part because she had a strong family history of breast cancer (her mother died of breast cancer). The clinician and patient explored her risk for breast cancer, and the patient was scheduled for a mammogram.

Although taking a patient’s health history was a routine part of patient care, some of these discussions led to visible changes in health care delivery. For example, during the history-taking for a 31-year-old man presenting with a constant dry cough that had lasted for 7 weeks, the physician discovered that the patient’s father and brother had died of lung cancer and his mother of a heart attack. The physician told the patient he wanted to treat him a little more aggressively because of this family history. Although this change in treatment may not have been necessary, it reflects how family-related concerns can affect patient management.

Among adults, women were more likely to be accompanied, often by their young children. When other family members accompanied adult men into the medical encounter, they were usually wives and sometimes mothers. Visits by adults older than 75 years were characterized by several factors: The patients were more likely to be men than any other visit type, and family involvement was greater than for any other adult category. Elderly patients were most likely to be accompanied by wives and daughters, many of whom served as primary caretakers. These visits were marked by frequent questioning and an exchange of information, and often care collaboration between providers and family members.

One of the most common patterns was for mothers and fathers to give and receive information about their children’s health, illness, and social context. Clinicians relied on parents to provide information about their child’s health condition, contextual information about family health history, or other familial, work, school or other environmental factors that may influence health and disease. These family encounters provided many opportunities for educating parents and providers about the important health issues of their children. Parental involvement progressively decreased through adolescence Figure 1

Qualitative analyses of patient visits identified categories of the different ways a family perspective made a difference in these patient encounters. Although many of the visits fell into a general category of family history of illness that did not appear to affect subsequent decision, 6 nonexclusive categories were identified in which a family-oriented perspective affected patient care: (1) using family social context to illuminate patient disease, illness, and health; (2) using family to discover the source of an illness; (3) discussing and managing the health and illness of family members; (4) family concern for patient’s health; (5) using the family as a care resource and care collaborator; and (6) family member receives unscheduled care. The following sections provide case examples of different ways the presence and/or incorporation of the family in patient visits can make a difference in the processes of care.

Using Family Context to Illuminate Patient Disease, Illness, and Health

In addition to discussions about the family and health history, the family social context provided important information for understanding and improving patient care. These discussions ranged from inquiring about or discussing the home and familial relationships as sources of support or stress, talking about the effects of a recent death or divorce on patient health and well-being, or determining family dynamics as they relate to a patients diagnosis or reason for visit. Patients and accompanying family members commonly initiated these discussions, but clinicians also asked about the patient’s social context, particularly when he or she knew the family. As illustrated in the following example, this contextual information can help to illuminate the patient’s “real” reason for the visit, guiding the clinician toward more productive discussions and effective patient care:

A 34-year-old man with a history of heart problems and very high cholesterol recently had stopped taking his medications. The clinician wanted to explore this further. He knew that the patient’s daughter had been killed in a car accident, so he initiated a conversation about the family. The patient admitted that he had quit taking his medications when this tragedy hit. “I just sort of gave up,” he said. “I know that I’m depressed over this.” The clinician took this opportunity to acknowledge the patient’s depression, and they talked about beginning antidepressants. He decided that medications might hamper the grieving process but encouraged the patient to talk. The clinician let the patient know that he was available any time of day.

Using Family to Discover the Source of an Illness

Clinicians frequently asked questions about the family to determine the source of a patient’s illness, for example, “Who else is sick in the family?” Patients were asked about their exposure to other family members (eg, passive smoke) and were also reminded of how they could spread disease to their families. These conversations were particularly productive when clinicians knew the entire family and both patients and clinicians could use the visit to problem-solve ways of improving the health of both patients and their family members:

A mother brought her 5-month-old infant in with complaints of a cough and runny nose. The clinician diagnosed the patient with asthmatic bronchitis and asked the mom if she smoked. The mom indicated that both she and the baby sitter smoke but not around the baby. The clinician took this opportunity to educate mom on how smoke permeates both clothing and the air. She stressed to mom that her smoking will aggravate the baby’s condition and that the baby will likely have more and longer episodes if she continued to smoke.

In this encounter, the clinician took advantage of a teachable moment to educate the parent on how her smoking was affecting her child’s health but also engaged the mother as a patient by spending time counseling her on smoking cessation.

Discussing and Managing the Health and Illness of Other Family Members

Patients often talked about the health of family members. Sometimes this came up because clinicians were also caring for other members of the patient’s family, and they wanted to know how they were doing (eg, “Is everyone else in the family well?”). In other patient encounters this arose because the patient was the primary caretaker of another family member and wanted information or support. In the following case illustration, the clinician makes recommendations that involve the husband and treats the family rather than just the patient:

A 53-year-old woman is visiting for a health maintenance visit. The patient is a breast cancer survivor who recently had a mastectomy and is currently on chemotherapy. The patient asks the clinician if she has had any experiences with women having breast cancer whom have had husbands lose interest in sex. The patient then confides that her husband has never said anything, but she senses a difference in him; he has absolutely no desire to have any sexual contact with her. The clinician listens and is very sympathetic. She encourages the patient to seek counseling for both of them and talks with her about talking with her husband about this sensitive issue.

Family Concern for a Patient’s Health

Although patients visited their physicians for a variety of reasons, some came in to allay the fears or pestering of family members. The initiation of these visits took different forms. In most cases, patients made appointments as a result of concern expressed or pressure from a family member. In other cases, the visiting patient would ask the clinician to pressure a family member to seek care or would go ahead and schedule an appointment for him or her. These “reluctant patients” may not have otherwise come in. Although women family members most often encouraged these visits, there were also examples of concerned husbands and adult sons who prompted their family members to seek care. In the following illustration, the clinician had been prompted by the patient’s wife to talk about a particular health issue that the patient would not have otherwise brought up:

A 56-year-old man came in to review his medications for high blood pressure. The clinician asked the patient how he was doing and the patient responded, “Everything is fine.” The clinician responded, “That’s not what you wife says. She says you’re having problems with your legs.” They spent most of the visit talking about the patient’s leg problems.

Using the Family as Care Resource and Care Collaborator

In some encounters clinicians and patients discussed the roles of family members in helping patients improve health and health outcomes. Family members became care resources in a variety of ways. In some instances, the clinician asked about the possibility of involving other members of the family in care management; sometimes the patient suggested that a family member should take this role. Some family members who accompanied patients asserted themselves during visits. For example, many parents who accompanied their young children into visits asked questions and offered advice or suggestions. Clinicians also involved family members as care collaborators, asking questions and involving them in decision making about health and health care.

An adult daughter brought in her 90-year-old mother because her behavior was becoming more unpredictable and erratic. During her most recent visit to her mother’s nursing home she had witnessed her running around with no clothes. That incident, along with a recent series of falls, caused the daughter a great deal of concern. “I know when my mother acts like this, this is not really my mother,” she said. “This is not the person I know.” During most of the encounter the daughter and clinician talked about the dosage and side effects of each of her mother’s medications, gradually eliminating some of the drugs that seemed unnecessary. The clinician commented to the daughter, “We need to get some order in this.” The daughter agreed.

Family Member Receives Unscheduled Care

Sometimes the family member actually became a patient. This happened more frequently when family members accompanied the patient but also when the patient visited alone. Clinicians, patients, and family members all initiated this unplanned care. Clinicians would specifically ask about a family member who was also a patient - and would even give the patient a drug sample to take home to a spouse or child. Often, patients came in requesting medication refills or other advice about a family member’s health problem. Some family members who accompanied patients took advantage of these visits to ask about a particular health problem, to get a free sample, or to refill a medication. In the following example, the clinician saw both husband and wife, and the husband took advantage of the encounter to talk with the clinician about his own health issue and to schedule an appointment:

A husband accompanied his 79-year-old wife to her medical visit; she had shortness of breath and weakness. Near the end of the visit the husband asked about the results of his prostate-specific antigen test. Because the clinician kept family charts, the patient’s husband was able to get his results. The patient’s husband then asked the clinician if he needed to make an appointment. The clinician looked in the chart and responded, “Well, you need to have a complete physical. Make an appointment for that.”

Sometimes the accompanying person gets direct care during the visit as in the following illustration:

A mother brought her baby in for her 1-week check-up. The physician asked the mother how she was feeling. The mother mentioned that she felt a “burning sensation” after urination. After asking the mother a few specific questions, the clinician instructed mom to jump onto the table for a brief examination. The mother was diagnosed with a vaginal tear and was instructed on how to care for it.

Discussion

This paper presents a data-driven typology that shows the multiple ways in which patients’ families influence the outpatient visit in family practice. As found in previous research, family-oriented care frequently occurred through the collection or discussion of family history of illness.^4,11 Information on family history and family context frequently led to important changes in decision making and treatment for both the patient and the family. With the renewed emphasis on family history as a method of identifying patients at increased genetic risk,¹² the family history-taking skills of family physicians should become increasingly important in educating patients and their families about genetic risk.

Patients also shared important contextual information about how family relationships and family stresses were affecting their own health. They talked about the health and illness of family members that had often influenced the patient’s reason for a visit. These conversations also helped to uncover the stress-related illness, anxiety, and depression of patients and family members, sometimes representing the “real” reason for a visit. These family-oriented exchanges have been shown to positively affect the physician-patient relationship and have an impact on patient satisfaction and perceptions of quality of care.^13-15

Limitations

Despite the uniqueness of the data and the grounded analysis approach, the findings must be interpreted within the context of the study limitations. Because these data were collected by field researchers who were unaware that family context would be a focus of the analysis, it is possible that there were other patient and physician behaviors related to family issues that were not recorded. The data were sufficiently rich, however, to easily assess the effect of family knowledge on physician and patient decision making. Any unrecorded behaviors might add to but should not substantially change our conclusions. Since the patient population studied was limited to a single Midwestern state, it is possible that other populations with a different ethnic and/or racial mix might behave differently. Future research of this type should attempt to include such populations.

Conclusions

Our study demonstrates that physician knowledge of family context gained from the care of multiple family members over time improves the quality of medical decision making and may account in part for the better outcomes that have been shown to result from continuous and comprehensive care.^15-18 The current health care environment, driven by managed care does not value or encourage the long-term relationships between physicians and family members that are necessary to develop the kind of family knowledge and connectedness shown by the physicians we studied. Further research in this area should focus on outcomes in patients whose physicians are informed by family context. Such data may help convince health policymakers and legislators of the importance of continuity of physician-family relationships in the delivery of high-quality primary health care.

Acknowledgments

This study was supported by a grant from the Agency for Healthcare Research and Quality (R01 HS08776) and a Family Practice Research Center grant from the American Academy of Family Physicians. We are grateful to the physicians, staff, and patients from the 18 practices without whose participation our study would not have been possible. We also wish to thank Drs Kurt C. Stange and John G. Scott who provided helpful comments on earlier drafts of this paper. Dr Crabtree is associated with the Center for Research in Family Practice and Primary Care, Cleveland, New Brunswick, Allentown, and San Antonio.