#91694: Families of Patients with Chronic Illness

The terms "illness" and "disease" are frequently employed interchangeably; however, there is a distinction, particularly in relation to the life experiences of families of patients with chronic illness. The terms actually tap into a potential gap between the view of the service provider and that of the patient [2]. "Disease" refers to the problem as viewed by the practitioner or service provider in terms of symptoms and, ultimately, the diagnosis [3; 68]. Diseases are conceptualizations or constructs based upon a culture within the practitioner's community and discipline (e.g., medicine, social work, physical rehabilitation). "Illness" refers to the human experience and the lived social reality of the manifestation of symptoms, suffering, and process of adaptation that patients and family members make in light of the disease given the patient's functional impairments [3,4,68]. Individuals and families have illness beliefs, which are cognitions or explanations that help make sense and meaning of the reality of their illness and the existential questioning of death, vulnerability, and mortality [125,132]. Similarly, when service providers refer to "disease course," they are talking about the progression of the disease and the characteristics and phases of the symptoms. Meanwhile, an "illness trajectory" encompasses psychosocial issues, such as managing the medical regimen, adapting to potential restrictions due to the disease, altering one's lifestyle, learning to live with the stigma associated with the disease, and adjusting to the social and financial impact of the disease [5].

The term "disability" refers to a medical condition that affects an individual's physical functioning and structures, which my extension impairs their movement, senses, or activities [87]. A disability also has both physical and social ramifications; therefore, there is a relationship between a chronic illness and a disability [88]. However, not every chronic illness is a disability nor can every disability be traced to a chronic illness [87]. This course will explore family members' chronic illness experience.

What is the distinction between an acute illness and a chronic illness? Acute illnesses involve a sudden onset of symptoms that are related to the disease process itself. Patients with acute illnesses require short-term care and usually improve upon receiving care [141]. The symptoms usually end shortly with almost complete recovery, resumption of prior activities, or death [3].

In the past, many types of conditions would have rapidly killed patients, but because of technologic and pharmacologic advances, patients with chronic illnesses, such as intellectual disability, multiple sclerosis, cerebral palsy, paralysis of extremities, cancer, diabetes, dementia, respiratory illnesses, acquired immune deficiency syndrome (AIDS), and stroke, live longer. However, because chronic illness tremendously affects patients' functioning and daily activities of life, and because of increased life expectancies, chronic illnesses may be viewed as long-term visitors who do not inform their hosts how long they plan to stay [3,6]. With many families, chronic illness becomes part of the patient's and family's identity.

The definition of chronic illness has always been nebulous. Miller offers one definition: a state caused by a nonreversible pathologic condition, which cannot be corrected by medical intervention and ultimately results in an altered health state with a lingering disability that cannot be easily treated [7]. The Centers for Disease Control and Prevention defines a chronic condition as lasting for one or more years and one that requires continual medical treatment and/or that limits activities of daily living [169]. Other researchers have provided similar definitions [157].

The National Center for Health Statistics highlights four dimensions of chronic illness [6,8]:

The Australian Institute for Health and Welfare has identified the following common attributes of chronic conditions [142]:

In general, chronic illnesses are slow in progression and lengthy in duration [143]. Given the nature of the illness, there is usually variability and fluctuation in symptom severity over time, profoundly affecting the family and the course of the patient's life [193]. Because so many different types of conditions fall under the heading of chronic illness, and the nature and social perception of each individual condition varies, it is important not to make sweeping generalizations. For example, the family of an AIDS patient will experience tremendous negative social stigma compared to a family who has a patient diagnosed with multiple sclerosis. This course attempts to provide an overview of how chronic illness, as a long-term visitor, affects family life and to provide a foundation for nurses, social workers, and other healthcare professionals to intervene.

It is estimated that 60% of adult Americans suffer from a form of chronic illness [2,8,169]. An estimated 150 million Americans have been diagnosed with a chronic condition, and of these individuals, an estimated 100 million have more than one chronic condition [156]. Approximately 40% of American adults have two or more chronic conditions [169,170]. Those with five or more chronic conditions comprise approximately 12% of the adult population in the United States. Given the developmental life cycle, elders will inevitably have to confront illness. Of older Americans, it is estimated that 80% have a chronic condition [195]. However, chronic illness is not merely associated with the elderly. Approximately one-third of persons in the United States 18 to 44 years of age experience chronic illness [2]. It is estimated that more than two-thirds of all deaths are caused by one or more of the following chronic diseases: heart disease, cancer, stroke, chronic obstructive pulmonary disease, and diabetes [196]. Between 2021 and 2022, the lifetime prevalence of depression, a chronic condition, increased to 21.7%, which translates to 54.2 million adults in the United States. In the same period, the rate of diabetes also increased to 11.5%, affecting 31.9 million adults [194].

Approximately 18 million children have some form of chronic illness. The majority of these children are not cared for within institutional settings but live with parents or guardians, which means that caregiving is provided within the home [9]. More than 75% of healthcare costs in the United States may be attributed to chronic illness [8]. For heart disease and stroke alone, total costs were estimated at $329.7 billion in 2014 [126]. The Centers for Disease Control and Prevention estimates that chronic conditions are responsible for a total annual cost of $4.1 trillion in healthcare costs in the United States [169]. It is projected that by 2030, healthcare costs associated with chronic illness will grow to $42 trillion [170,197].

Theories are logical systems of concepts that provide a framework for organizing and understanding observations. They are intended to offer comprehensive, simple, and dependable principles for the explanation and prediction of observable phenomena. Theories provide explanations and direction for how the service provider will proceed during various phases of the change process. They define the problem, the etiology of the problem, and, ultimately, guide assessments and interventions. All families experience a crisis at the onset of chronic illness; therefore, the first theoretical perspective to review is crisis theory.

There are two types of family crises: maturational (i.e., transitional or developmental) and situational. Maturational crises refer to universal crises that are associated with the normal developmental stages of the individual or the family, which occur at major life transitions. These life transitions include adolescence to adulthood, middle-age to old-age, birth of a child, school entry, children leaving home, and retirement [10]. These are predictable and universal life-stage events that can be anticipated and for which families can prepare accordingly.

Situational crises, on the other hand, are unpredictable. They are typically major sudden interruptions for the individual or the entire family system. They originate from three different sources: (1) material or environmental (e.g., fires, natural disasters); (2) personal or physical (e.g., loss of limb due to accident, diagnosis of an illness); and (3) interpersonal or social (e.g., death of a loved one) [11]. Inevitably, the crisis causes anxiety and disequilibrium, which can trigger anxiety and feelings of helplessness and despondency, and the individual or the family must learn to cope [158]. The crisis situation is short-term or time-limited.

A crisis can be viewed in one of two ways: as a threat or as an opportunity [12]. It can be viewed as a threat because the crisis could have negative ramifications or consequences on psychologic health and social well-being. It can also affect quality of life. Self-esteem and problem solving are correlated with quality of life; yet, when a crisis hits, problem solving may be temporarily hampered, which then leads to a sense that one's quality of life has been disrupted [13]. However, from an opportunity perspective, an individual or a family who is in crisis is more vulnerable and, consequently, may be more receptive to interventions, which can then lead to growth [12]. Family crisis interventions are often successful because the growth and opportunity that may occur during crisis can break the normally rigid boundaries of the family system, making the family and its members more open to change [127].

A closer look at the major tenets of crisis theory and a brief case study will illustrate this theoretical perspective. This course provides only a basic overview of crisis theory.

Patient Y is a married woman, 76 years of age. She emigrated from China to the United States with her husband 53 years ago. They have three children: a daughter who lives near them; a son who lives in the same city; and a son who lives out of state. They also have eight grandchildren. Patient Y is a homemaker. She and her husband have lived in the same neighborhood, in the same house for more than 40 years. Patient Y speaks little English and depends on family members to translate for her when the need arises. Recently, she became ill, complaining of dizziness, shortness of breath, being tired all the time, and loss of appetite. During a visit, her daughter noticed that she looked pale and had lost strength in her left arm. She convinced her mother to go to the hospital and accompanied her; Patient Y was diagnosed as having had a mild heart attack and was admitted to the hospital for tests and observation. On the second day following hospitalization, Patient Y suffered a second, more serious heart attack and was admitted to the intensive care unit (ICU). Her condition was guarded and other family members were notified, including the son who lived out of state.

The hazardous event in this case scenario is the onset of the illness and the symptoms. It usually occurs when the family receives news of the diagnosis. Rolland's trajectory phases of illness chronicle the natural history of chronic diseases [18]. Rolland's first phase is the crisis stage, which includes the onset of symptoms, learning about the diagnosis, and the initial adjustment period. During this stage, the patient and family assimilate the news of the diagnosis, attempt to comprehend the meaning of the disease, and begin grieving the loss that the disease will bring. Eventually, there is a movement toward acceptance and gradual equilibrium in the family system. In crisis theory jargon, the hazardous events in this case study are the initial diagnosis of the first attack, and later, the diagnosis of chronic heart disease and Patient Y slipping into a coma. Patient Y's family will learn of the diagnosis and begin to comprehend the enormity and gravity of the situation.

Although visiting in the ICU was strictly limited, a family member was allowed to stay with Patient Y most of the time due to her anxiety about hospitals and the staff's limited ability to converse with her. Patient Y continued to refuse to eat, and IVs were maintained. Her condition was guarded, although she insisted through her husband and children that she was fine and just wanted to go home to prepare for Thanksgiving.

The younger son was contacted due to the seriousness of his mother's condition and arrived the night after her second heart attack. The daughter organized the family to take turns being with Patient Y, and the grandchildren and other extended family members provided transportation, cooked, cleaned the home, and met her basic needs.

After three days in the ICU, Patient Y was transferred to the telemetry unit. The crisis situation began taking its toll on the family. The younger son argued with his sister that his mother should be allowed to go home to familiar surroundings, familiar foods, and family care. He was angry about his mother's condition and blamed his father and siblings for not taking better care of her. Patient Y's husband ignored him and refused to discuss any future plans with him or the other children. The long days and nights and his worry about his wife were obviously affecting this quiet man whose wife had always looked after him and dealt with the children.

The daughter took over and met with physicians and the hospital social worker and organized family resources to assure her father's care. She arranged for a family member to always be present with Patient Y and arranged with the hospital to allow the family to bring more familiar foods to her mother. She quietly and competently mobilized family resources to meet new and different demands and began gathering information about available resources for when (and if) her mother was able to leave the hospital, in spite of her father's denial and her brother's unrealistic optimism.

Crisis theory is helpful in normalizing the crisis event and the responses evoked by Patient Y's illness. In this case study, the son's anger and the calm, methodical, and systematic responses of the daughter are not viewed in a pathologic perspective. Instead, they are viewed in light of the crisis and from the perspective that a range of emotions and reactions are normal. The range of responses on the part of the patient and/or family members may include: (1) a biophysical response (e.g., the patient's experience of pain and discomfort); (2) the range of emotional responses (e.g., anger, sorrow, shock, loss, helplessness, anxiety about welfare of children, spouse), fear of death, and other emotions; (3) the cognitive response (e.g., fears, belief systems about how illness will affect the future); and (4) the behavioral response (e.g., the patient and the family's adjustment to medical regimen, hospital rules if hospitalized, assimilation of diagnosis) [10]. Because of the crisis event, the family system freezes, requiring an altering of family functions and roles. In this case scenario, the daughter's role was redefined as she mobilized the family to meet the various demands of her mother's illness. The grandchildren assumed various caretaking roles including cooking, cleaning, and transporting Patient Y's husband to and from the hospital. Because the stress was a threat to the ongoing functions of the family, its members mobilized its energy to establish new equilibrium.

Practitioners should not view "families as mere adjuncts to the patient, [as] it will perpetuate the tendency for healthcare professionals to identify families as generally dysfunctional, to marginalize the family's role in care" [160]. Therefore, family systems theory helps to understand the course of the illness within the context of the whole family's beliefs and dynamics. Family systems theory is based on von Bertalanffy's theory [19]. von Bertalanffy argued that systems are a set of interrelated elements but that each of the elements is distinct from the environment in which it is embedded. Energy from the environment will inevitably permeate the boundaries of the system. The family is then viewed as in a continual state of change given that the family will always be interacting with the environment [19]. Family systems theory is quite detailed and this course provides only an overview of the theoretical perspective.

The family in this case consists of a mother, a father, and three children: a daughter 39 years of age; a son, Patient J, 38 years of age; and a daughter 32 years of age. Patient J has recently made contact with his family after an absence of 16 years. During this time, he has lived in another state and has had no contact with his father and older sister. He has been in touch sporadically with his mother and younger sister, although without the knowledge of his father and older sister. Nine years ago, Patient J was diagnosed with HIV and 11 months ago was diagnosed with AIDS. His health is deteriorating, and he will most likely be unable to care for himself within a few months. Patient J has been in a stable relationship for about seven years, and his partner is both willing and able to care for him throughout the course of his illness. Patient J would like to reconcile with his father and older sister and move back to his hometown. His partner, a successful writer who works from their home, is willing to accompany him. They have purchased a home approximately six miles from Patient J's family home and have arranged to transfer his medical treatment to a local physician. All of this has been accomplished with the assistance of Patient J's younger sister and mother, both of whom are eager to have the patient near them but are apprehensive about the reception he will receive from his father and older sister.

In this scenario, we see how the diagnosis of HIV and AIDS has estranged Patient J from both his father and older sister. Although Patient J has made repeated attempts to bridge the gap, his attempts have been rebuffed. The patient's mother and younger sister have worked to bring him home, with much disapproval from his father and older sister. We can imagine the conflict that must have transpired within the marital dyad and perhaps between the two sisters. We can also see how AIDS has affected the lives of Patient J and his partner. Patient J's partner, who is committed to him, has taken on the responsibility of providing the day-to-day care for the patient. He is also willing to sacrifice his professional writing career, deciding to relocate with Patient J to their new home.

Derived from the family systems perspective, the FAAR Model has been developed specifically for understanding family response and coping with stressful life events [29,199]. It encapsulates elements of both crisis and family systems theory.

The FAAR Model argues that all families experience a pileup of demands, stressors, and strains. Stressors are acute and isolated events that cause changes in the family system, while strains are ongoing tensions [162,231]. Families attempt to maintain equilibrium or homeostasis by employing their resources and coping behaviors to deal with the demands and stressors of the illness [29; 30; 232]. The resources and coping behaviors may be viewed as the family's protective factors [30]. Tangible resources might include finances, while intangible resources are the psychologic inner strengths. Stressors might include daily minor disruptions of the day, unresolved family strains, and normative and non-normative events [30].

How families accomplish a sense of equilibrium is a function of how they perceive and ascribe meaning to the stressors they experience and the resources they have available to cope with the stressors [20; 30; 162; 232]. There are three levels of meanings. First, situational meanings refer to the family's appraisal of its resources and coping behaviors and its appraisal of the stressor [30]. The second level of meaning involves the family's identity; that is, how the family views itself as a family unit [30]. The third level of meaning consists of the family's worldview, which refers to how it sees its family system in relation to the larger system (i.e., community, society) [30]. Overall, how a family recovers from the crisis will be a function of the number of demands, appraisal and meaning-making of the crisis, and the resources used [162]. This model is strength-oriented and is consistent with the person-in-environment perspective [163].

In summary, how families engage their repertoires of tangible and intangible resources and coping skills to deal with the stressors and the meanings they ascribe to illness event will influence family adaptation [30,231]. The goal of practitioners who utilize the FAAR model is to facilitate the family's resources and coping behaviors in order to restore balance within the family system. It assumes that practitioners will take a proactive approach in working with families and that families have the strengths to deal with the stressors [30].

According to the FAAR Model, there are three phases that families travel through when the news of chronic illness hits [199].

Some have compared the coping and adjusting required of patients with chronic illness and their families to a job, with the requisite duties, skills, and knowledge. One of the duties involves managing social relationships with family, friends, employers, coworkers, and health providers to ensure healthy outcomes [233]. Patients benefit from skills to maintain schedules and routines in order to accommodate medical regimens. Knowledge about how to manage the symptoms of the chronic condition is also required.

Developmental transitions are normal aspects of life, and accomplishing developmental tasks may bring about stress. However, the uncertainty of chronic illness compounds these difficulties; it influences how the patient views his/her chronic condition and ultimately affects the family system [6,20]. Chronic illness inevitably sets a different tone for the individual and the family.

Patterson and Garwick argue for systemic analysis and the need for longitudinal studies on families experiencing chronic illness. They maintain that it is difficult to disentangle the stressors and demands that existed prior to the diagnosis of the chronic condition from the stressors and demands that emerged as a result of the chronic illness. However, it is the multiple demands that these families experience that nurses, social workers, and other healthcare professionals should address. Patterson and Garwick coined the term "pileup of demands" to describe these cumulative stressors and demands [20]. Parents of children and youths with chronic illness often assume the responsibility of managing their children's medication regimen, dealing with any emergencies that might arise, and supervising educational, social, and recreational activities [205]. These responsibilities are in addition to typical day-to-day responsibilities of family life. When symptoms of the illness are unpredictable and when new medical regimens are introduced, family roles, tasks, and responsibilities will inevitably be renegotiated [232].

In a study with 17 families affected by chronic illness, participants described how stressors varied at different phases of the illness and healing [168]. The first phase of chronic illness is described as the "fight" or adversarial stage, during which the family member learns of the illness. This stage involves acknowledging the illness and the stressors that emerge as a result of dealing with the illness. The second phase involves family members coming to terms with the illness and redefining family life. The third phase involves the day-to-day living of the illness. Often, families have to re-invent routines in order to minimize the impact of the illness on the family system. Phase four focuses on maintaining the social relationships within the family so everyone feels supported. The final phase is figuring out how to move the illness to the background of family life [168]. A qualitative study found that families initially felt that their family life fell into disarray because routines were disrupted and, often, controlled by the patient's needs [206].

Freud first talked about the unconscious mechanisms of coping. His discussion of defense mechanisms, such as denial, repression, rationalization, and projection, were unconscious ways in which individuals managed stress and anxiety. By the 1970s, the research moved into examining conscious coping strategies [56]. Lazarus was one of the first to develop a theoretical perspective about coping as a conscious process [57]. He first defined stress as consisting of three components: (1) primary appraisal, the process of perceiving the stress as a threat to oneself; (2) secondary appraisal, the process whereby one brings to mind the potential response to the threat; and (3) coping, which is the process of carrying out the response(s) to deal with the stress. This is not necessarily a process whereby each stage is experienced in an unbroken, linear manner. For example, if a family initially learns of a child's diagnosis of a serious illness, family members may initially be in shock, but may realize that they have a full array of coping resources, allowing them to reappraise the situation and perceive the threat as less threatening [58].

Lazarus identified two types of coping. Problem-solving coping is concrete and task-oriented [57]. It involves doing something to alter the source of stress [58]. Emotion-focused coping is targeted at reducing or managing the emotional distress that is triggered by the stressful event [58]. Both types of coping are utilized in stressful situations. However, Folkman and Lazarus found that problem-solving coping is used when individuals feel that something constructive can be done, while emotion-focused coping is used primarily when individuals perceive the stressful situation as something that must be endured or persevered [59]. Folkman and Lazarus later highlighted eight different coping styles that again fell into two major headings: problem-focused coping and emotion-focused coping. Problem-focused coping consists of problem-focused strategies and the seeking of social support. Emotion-focused strategies consist of eight subdimensions [59]:

Individuals who are self-compassionate are able to view stressors in a less threatening manner and ultimately are more likely to use cognitive reframing strategies and less likely to employ avoidance coping strategies [173]. In a study in which parents of children with chronic illness were interviewed, many parents reported using cognitive strategies (e.g., reframing, passive appraisal) [211].

Some patients and family members may utilize avoidant coping strategies (e.g., disengagement), and it is important to not simply categorize these strategies as negative or dysfunctional. In some cases, a break from the stressor is required. For parents with a child with chronic illness, distractions are associated with good psychosocial outcomes and positive emotional coping (e.g., gratitude and positive meaning making) [248].

Dyadic coping is a coping process that involves partners' interactions and influence on appraisals, communication, and coping [249]. In other words, how each individual appraises the stressors and copes are contingent on how the other partner copes. With chronic illness, each member of the dyad appraises the event, and, together, discuss the stressor and explore how to help each other reduce and cope with the stress [249]. In a 2024 study, when a couple employed dyadic coping strategies to deal with the onset of the chronic illness, both partners experienced greater well-being, felt closer to each other, and experienced higher levels of sexual satisfaction [249].

Cultural variations in coping have been discussed in the literature. Culturally based worldviews and values affect how individuals respond to stress. Collectivistic values emphasize interpersonal relationships (i.e., family or other social support networks) and whether these relationships affect coping. For example, in one study, Chinese caregivers relied primarily on family-related coping strategies. These strategies focused on obtaining help and support from immediate family members rather than assistance from outsiders [212]. This type of coping should not be labeled as pathologic, as it fits within cultural norms of collectivism, filial piety, and familialism. Values that focus on independence might dictate that individuals from Western cultures use coping strategies such as being assertive, disclosing vocalizing feelings and thoughts, confronting others, and actively problem-solving [60]. Western frameworks, however, do not capture the full nuances of the coping strategies of individuals from communal and collectivistic cultures (i.e., Asia, Latin America, and Africa). For example, forbearance, perseverance, and sacrifice are characteristics that are highly valued in collectivistic cultures. Consequently, individuals from these cultures may cope by not disclosing their problems to others because they do not want to burden others [60]. Helping professionals should therefore not immediately label these strategies as resistance to or denial of the problem and attribute pathology. Helping professionals should be alert to the possibility that more serious psychologic, social, and mental health problems might be being masked [60].

Religious coping refers to the process of harnessing one's religious or spiritual beliefs to deal with life's adversities. Calling upon a higher power, God, or the sacred for hope and providence moderates the stressors associated with challenges [250]. Religious coping among ethnic minorities (particularly African Americans) has also been discussed in the literature [61]. Culver et al. found that African Americans and Hispanics used greater levels of religious coping and humor than whites [62]. Furthermore, they were less likely to use venting compared to their white counterparts [62]. In a comprehensive review of the literature, Latino caregivers who had children with a chronic illness tended to use religion/spirituality, support from their family network, alternative healing practices, and information about the illness to cope [174].

Hill's model of coping specifically addresses families' adaptation to a family member's illness [63]. The model was initially developed to understand how mothers coped with their children's diagnoses of sickle cell disorders; however, it is also useful in understanding the coping styles used to adapt to a family member's chronic illness. Hill proposed five different coping strategies [63]:

These different types of coping styles overlap with Lazarus' and Folkman's initial conceptualization of coping styles.

Variations exist in how families respond to the consequences of chronic illness. These variations are influenced by nature and characteristics of the condition, resources, illness phases, family life stage, and gender [20].

The terms "caregiving" and "caregiver" have been employed in this course rather ubiquitously. At what point do we define a person as a caregiver? After all, family members provide both concrete assistance and mutual support to each other as a part of normal family interactions [81]. Biegal et al. maintain that caregiving in the context of chronic illness extends beyond the traditional tasks and services offered by family members [81]. Caregiving in these situations is "the increment of extraordinary care that goes beyond the bounds of normal or usual care" [81]. Because it extends beyond what is normally provided, one of the emotional consequences that a family may experience is stress or burden.

There are two types of family caregivers. A care provider is one who performs and carries out practical tasks such as shopping, doing housework, cooking, and caring for the patient's hygiene [82]. A care manager refers to family members who arrange for and/or coordinate the caregiving services of other professionals or lay people [82]. Socioeconomic status and the extent of the patient's illness will play a role in determining whether a family caregiver is primarily a care provider or a care manager [82].

Others define caregiving as the behavioral expression of the commitment to caring, which is the affective component of an individual's commitment to the welfare of another [83]. Yet in a study conducted by Ayalong, caregivers distinguished between the terms "care" and "caregiving" [84]. Care was a reciprocal activity, while caregiving was something one had to do (i.e., an obligation), although it could be viewed in a positive manner. Whatever definition is used, the literature converges on a single point-families experience caregiving stress, which might ultimately lead to caregiving burden when a family member has a chronic illness.

Caregiver stress results when the demands of providing care for an ill family member are perceived as exceeding the resources available [82]. These resources may include what was discussed earlier-personal, family/social, and community resources. Caregiver stress can result in depression, anxiety, feelings of helplessness, and burden.

The concept of caregiver burden received much empirical attention in the 1980s, and most of the research has focused on impaired elderly patients. Recently, however, the literature has used this concept with other populations as well. Generally, caregiver burden has been defined as the range of physical, psychologic, social, and financial strains or problems experienced by a caregiver in which a family member has a disability [85,255]. It is perceived negatively by the caregiver [82]. The concept has been broken down into two categories: objective burden and subjective burden. Objective burdens refer to the emotions stemming from providing specific caregiving tasks and the time spent on these tasks [86]. Subjective burdens encompass the emotional, psychologic, and social impact involved in providing care [86,255]. Not surprisingly, caregivers who provide more activities of daily living and perform more tasks related to the management of the patient's health tend to experience more anxiety symptoms and poorer health [215]. Overall, the concept of caregiver burden has not been consistently operationally defined and measured in research [255]. Some have advocated shifting the term from "caregiver burden" to "caregiver resilience" and focusing on providing caregivers restorative services, such as respite care and problem-based home visiting [256].

Lim and Luna identified four potential cultural values in the Mexican culture that may help us to understand how Mexican cultural values and belief systems color the caregiving experience [92]. These four cultural values include: emphasis on the family unit; emphasis on the family over the individual; specific gender role expectations; and emphasis on existential suffering.

The family is very important in Mexican culture. It is the basic source of emotional support, and interdependence is valued [92,93]. Children are socialized early on to carry out family responsibilities and esteem family unity [93]. Because interdependence is emphasized, the extended family structure is relied on for support [93]. Therefore, one could postulate that Mexican American families view caregiving in a positive light as it is an extension of family life, with individual needs relegated to the needs of the family. Elderly family members are highly revered for their wisdom and often live with their family [148]. However, one could also argue that the emphasis on interdependence could lead to high levels of caregiver stress and burden because caregivers ignore their needs in favor of the ill family member [92]. The themes of familismo and marianismo emphasize close-knitted family ties and bonds and the expectation of feminine nurturing [258]. These are motivators for Latina caregivers, who perceive provide care as an essential part of being a good role model. However, this can be at the expense of their own health and well-being. For example, in one study, more than 20% of Latina caregivers indicated they were eating fewer than two meals per day and nearly 25% did not exercise regularly [258]. This was further confirmed in a study by Cox and Monk [94]. Yet, despite the high levels of reported caregiving stress and familiarity with formal services, the caregivers opted not to use formal services. They rarely even disclosed to friends or close family members about any stress [94]. Hispanics tend to have higher family systems-related resources [216]. Although this is a cultural strength, external resources have been found more beneficial in alleviating stress.

Other studies have indicated that caregivers of Hispanic descent are more likely to decrease their work hours or quit their job entirely in order to provide care for an ill family member [178]. Similar patterns have been noted in third-generation Asian Americans, who, along with Hispanic caregivers, exhibit the greatest number of caregiving hours [178,179].

The focus on the collective over the individual is related to the cultural value of family orientation [92]. In this orientation, the individuals' well-being and identity are intricately linked to the collective reference group (i.e., family unit). Caregiving tasks are distributed among family members, and therefore, the social support network acts as a buffer against the caregiving burden [92,148,217]. However, Tirrito and Nathanson found that female caregivers in Hispanic, Asian, and African American families with an extended family network were experiencing comparable levels of role strain and stress as caregivers from nuclear white families [67]. Similarly, other findings have shown that, although the extensive social network system provided support to Hispanic families, the actual instrumental assistance (i.e., running errands, cooking) provided by relatives was minimal [92]. It is important to remember that Hispanic families are heterogenous, and it is important for providers not to assume that Hispanic caregivers have extensive family support [216].

Gender role expectations are highly demarcated in Mexican American families. Men perform tasks and duties related to the outside world, while women perform tasks related to the family. In terms of caregiving, a "good" man will care for his family, although this is often related to financial or material support [257]. Furthermore, there is an expectation that women will provide the caregiving duties, and daughters appear to be the first choice of caregiver across racial/ethnic groups [92,178]. When men perform caregiving tasks, they are most likely to help with transportation [148]. There is some indication that Latina daughters assume caregiving responsibilities earlier compared to their white counterparts [95].

Finally, the cultural characteristic of enduring suffering is another value associated with Mexican American culture. In part, existential suffering is rooted in Catholicism [92]. This cultural trait may influence the caregiving experience both positively and negatively. The caregiving process may be perceived as self-sacrificing and a source of pride, even as the caregiver may be reluctant to seek help from community services or assistance from family and friends [92]. In addition, the caregiver may keep silent about any stress or sense of isolation experienced. A study conducted by Calderon and Tennstedt found that Puerto Rican caregivers were more likely to cope with the stressors associated with caregiving by employing strategies such as resignation, denial, and respect. They turned to their Catholic faith and asked God to give them strength [96].

In a study conducted with Latina and white female caregivers, cultural values and acculturation appeared to play a role among Latinos in their decisions to institutionalize elder family members [95]. Those Latina caregivers who had positive views toward caregiving and were less acculturated were more likely to play a role in the decision to delay institutionalization. Cultural values of familismo, where the family is emphasized over the individual, respecto, where respect for older persons is emphasized, and dignidad, which is the value of maintaining dignity and not asking for help, may all contribute to caregiving decisions, such as not wanting to institutionalize a family member [95]. However, practitioners should not assume that all Hispanic/Latino families will be willing to care for their elders. Those Latino caregivers who had less positive views of caregiving institutionalized their elderly family members more quickly than either their white counterparts or those who had more positive views of caregiving [95].

African Americans are more likely than other ethnicities to extend caregiving to relatives outside their immediate families [97]. Caregiving in African American families tends to be wider in scope and assumed by adult children, friends, and members of an extended family network [84,218]. Given this, there is a stereotype that African Americans are less likely to use nursing homes for their elders. Yet, African American adults 85 years of age and older are more likely to reside in nursing homes compared to whites [98].

The decision to provide care is embedded in the sociocultural context stemming from historical oppression and slavery, which required mutual support and sharing of resources in order to survive. The preservation and maintenance of this cultural value of family and filial obligation has been transmitted over the generations to combat day-to-day racism and discrimination [259]. Groger and Mayberry examined African Americans' attitudes about filial obligations toward elder [98]. African American college age students and young adults had the most stringent expectations about filial obligations. They rejected the idea of nursing homes. In particular, they declared that they were willing to put their careers on hold to care for their family members. The young adults were similarly passionate, yet they qualified this by noting the role of the elders' needs versus the family's ability to meet those needs. African Americans from the middle-age group were the ones who actually experienced the demands of providing caregiving to elderly family members while balancing raising their own children. Nursing home placement was considered the last resort. Other intermediate options such as homecare services were weighed. African American elders understood the realities of caregiving as they had experienced it. They also understood firsthand the burden of caregiving, yet they asked for small things, such as not being ignored and being visited. They wanted to be independent and valued their children's help, but they did not want to be a burden [98]. In a 2017 study, African American caregivers averaged 11 hours more per week in caregiving activities post-stroke compared with their white counterparts [180].

Studies have found that African American caregivers reported less caregiving burden compared to their white counterparts [98,99]. Some have postulated that the lower levels of burden can be explained by the African American family structure. One pattern among African Americans is that extended family members share households for both economic and cultural reasons, such as beliefs about connectedness [100]. Studies indicate that African American families often have an extended network of family members, relatives, friends, and other individuals who assist in providing care [218]. These norms may reduce the stress and strain associated with caregiving [100]. Indeed, Dilworth-Anderson et al. found that the majority (74%) of the structures were collectivist in that they were formed by two or more caregivers [100]. It is plausible, however, that the expression of burden is expressed differently in African American caregivers than in white caregivers, and it is important to note that much of the measurement employed in research includes standardized scales that may not adequately capture differing expressions of burden [96]. Calderon and Tennstedt found that African American caregivers described the caregiving experience through somatic complaints and feelings of frustration and anger [96]. As with Puerto Rican caregivers, resignation was the most frequently expressed mode of coping among African American caregivers. They viewed caregiving as part of their fate and part of God's will [96]. African American caregivers may use the church for their emotional support, as religion and their church family are often central to their lives [149]. White caregivers employed more active and hands-on techniques, such as relying on formal services to mitigate the day-to-day logistics of caregiving, and found other outlets, such as gardening or other hobbies [96].

It is important to remember that although caregiving may be part of African Americans' sociocultural tradition, unique sociocultural and environmental stressors can impact the caregiving experience. African American caregivers experience an interaction of racism/discrimination, cultural norms, and financial burdens/concerns that contributes to caregiving stress [260]. For example, they may face challenges in accessing services due to institutional and/or discriminatory barriers and related stress. Financial stress complicates caregiving for ill family members [260].

Traditional Asian beliefs and values are centered around Confucian thought, which focuses on harmony, unity, and family [101]. In traditional Chinese culture, for example, one way to maintain harmony is to adhere to the hierarchical structure of the family. Therefore, there are specific prescribed roles for men and women; men have more authority than women. Women's roles are primarily circumscribed in the home and in child-rearing activities [101]. Children are expected to obey their parents and demonstrate filial piety and to repay their parents for all the sacrifices they have made for them [102]. Filial piety is defined as a set of obligatory behaviors and expectations closely tied to family relationships; it is characterized by children respecting and obeying their parents and families honoring ancestors [219]. This belief system extends to providing physical, emotional, and material/financial care to parents and elders [212]. In families who adhere to Confucian principles, caregiving is allocated to daughters-in-law. If there is no daughter-in-law, the role goes to unmarried daughters, then to married daughters, and finally extended female family members [146]. Filial piety is believed to act as a buffer against caregiver stress and to improve the perception of caregiving [181,182].

The concept of filial piety also applies to Korean culture. As noted, the eldest son and his wife typically assume caregiving tasks when the eldest son's parents become old and frail. The son is to fulfill his financial obligations to his parents; however, it is the daughter-in-law who is to execute the day-to-day caregiving activities because caregiving is congruent with the cultural gender role expectations of Asian women performing domestic and nurturing tasks [90,103]. Given this cultural expectation, Lee and Sung hypothesized that Korean caregivers (primarily daughters-in-law) of frail elderly parents would display greater filial obligations, and white caregivers (primarily daughters) would have access to more formal services. Therefore, these variations of norms and values would produce differential responses toward caregiving [90]. They found that the white caregivers reported closer relationships with the care recipient and higher gratification from the caregiving compared to their Korean caregiver counterparts. Korean caregivers showed higher levels of filial responsibility and utilized greater extended family support, while white caregivers displayed lower levels of filial obligation and employed more extensive formal services. The level of overall caregiving burden was lower for Korean caregivers, which was associated with higher levels of filial responsibility and the use of extended family support. However, the level of emotional burden was much higher compared to white caregivers, and this may be because Korean caregivers are primarily daughters-in-law, who ultimately experience less gratification with caregiving [90]. Studies also show that when elderly parents perceive their children are exhibiting filial piety, their well-being increases along with their health status [150].

Chao and Roth found somewhat similar results in a qualitative study of 31 Taiwanese women, 23 to 58 years of age, who were primary caregivers to their parents-in-law [104]. A major theme that emerged was the "just doing," which encapsulated the caregiver's sense of duty, sense of dealing with trials, and sense of filial piety, which was viewed as a lifelong commitment [104]. Therefore, the amount or degree of caregiving was not the issue, but rather, how the caregiver interpreted the nature of her role. In cultures characterized by filial piety, caregiving is seen as a reciprocal expression of love [212]. Clearly, cultural norms influenced perceptions of caregiving.

One might hypothesize that as the individuals become more acculturated, they demonstrate less filial piety. However, research indicates that highly acculturated individuals continue to exhibit high levels of filial piety [183]. Consequently, the family system, may serve as a barrier to seeking formal and community assistance [102]. This may further be compounded by the Japanese cultural value of shikata ganai, which refers to the view that the situation cannot be helped and nothing else can be done [102]. Asai and Kameoka further argue that it may not necessarily be filial piety that influences the Japanese to provide caregiving, but rather the cultural value of sekentei [105]. Sekentei refers to social dignity, reputation, and social appearance in public [105]. It taps into the notion of individuals behaving in a certain way because of one's concern about the public eye on behavior. In terms of caregiving, sekentei comes into play because individuals are concerned about what others may think of them if they do not provide caregiving [105]. The notion of saving face (i.e., avoiding public or community criticism) surfaced in a study conducted with Korean caregivers [103]. Coupled with the desire for family harmony and saving face, these cultural values impede caregivers from seeking formal services for chronically ill family members; instead, they opt to provide care within the home [103].

In Filipino culture, which is highly influenced by Catholicism, caregivers may view the caregiving experience as a part of God's plan [102]. Again, as mentioned earlier, the reliance on God and the emphasis on quiet endurance may color caregiving both positively and negatively. Filipino caregivers look towards God for support and do not view caregiving as a burden. However, this silent perseverance may impede Filipino caregivers from seeking formal and community assistance.

The counterpart to filial piety as exemplified in Filipino culture is the concept of utang na loob, which refers to a debt of gratitude within relationships [102,261]. Children are indebted to their parents because their parents raised them. Therefore, children are expected and socialized early on to care for their parents until their parents' deaths [102,261]. Filipino women expressed a sense of duty that stemmed from gratitude over what their parents had sacrificed. Caregiving is viewed as part of the life cycle. Because of the gendered role expectation on women to be caretakers and nurturers, they feel that when their parents inevitably require care, they will be the ones to assume this role [261]. Again, it is plausible that these cultural values may provide a buffer against caregiving burden and stress.

The perceptions of the caregiving experience are colored by cultural factors and the social environment. In many cultures affected by delayed marriage, divorce, and migration for work, the ability of family structures to provide care has been impacted [256]. As the United States becomes increasingly multicultural, it is important for nurses, social workers, marriage and family therapists, and other healthcare professionals to explore and identify specific cultural factors that influence the caregiving experience and help-seeking behaviors, as well as potential outcomes, such as caregiving stress and burden. It is also important to remember that there is tremendous diversity within groups, and therefore, the themes presented above should not be generalized to every individual and family with which the helping professional comes into contact. Factors such as level of acculturation, age-of-immigration, educational level, and socioeconomic status contribute to the heterogeneity among groups.

A general framework of the assessment process is highlighted below, using Qualey's three-stage assessment process when working with family caregivers [107]. Within this framework, basic problem-solving skills are identified [108].

Genograms are excellent assessment tools that visually represent family chronology and family patterns. They provide healthcare professionals the ability to map the family structure and to note and update the family picture as it forms and alters [109; 125; 263]. Genograms give both the clinician and the family member(s) a sense of the relationships among family members by highlighting the roles of family members. The focus is on the interactions and transactions of family members. It removes the scrutiny on any one individual [263]. This can be extremely helpful in identifying the caregiver(s) of the ill family member and the specific tasks they assume. If the caregiver is experiencing strain, then identifying the roles and tasks of the caregiver in the presence of other family members may help them to realize the extent of caregiving provided and offer to take on some of the responsibilities. Healthcare professionals may ask the following types of questions [109]:

Life events and crises, both maturational (e.g., births, deaths, a family member leaving for college) and situational (e.g., job loss, chronic illness) may be tracked on a genogram. It is also important to take into account the family's developmental life cycle [125,151]. This provides a sense of historical continuity and gives a picture of the effect that changes have on the family system [109; 264]. In terms of chronic illness, the clinician can explore these issues with family members by asking the following types of questions [109]:

Genograms can go beyond the immediate, nuclear, and extended family and examine other networks, such as fictive kin, neighbors, community, friends, school, work, religious/spiritual supports, and other social supports [263]. A genogram can offer an objective view for practitioners to see the transactional nature of caregiving for a particular family [264].

Another visual tool employed to assess a family's degree of social support network is the Social Support Network Map [110]. This assessment tool can be utilized with the primary caregiver of a patient with chronic illness. To conduct this assessment, the helping professional assists the caregiver in identifying family members in the immediate and extended family system, friends and neighbors, formal organizations, and other community services whom the caregiver perceives as supportive, particularly in his/her role as a caregiver. When working with children who have assumed caregiving tasks, a social network map can provide a useful, visual tool for articulating challenging concepts, such as the complexity of family dynamics, nuclear and extended family relationships, and other social supports [185]. This tool may be used to launch discussion with caregivers about their needs and the resources available to them for help. Social network mapping assesses the following types of issues [110]:

Standardized instruments or measures are also viable assessment tools for healthcare professionals. Standardization refers to the process whereby the same procedures are applied across a set of situations so that the results from administering an instrument can be compared and interpreted [111]. Standardization yields findings where one knows that the differences in responses are a reflection of the respondents versus the process of administering the instrument [111]. Standardized instruments have established psychometric properties, which indicate the degree of an instrument's validity and reliability. Such instruments can be useful in clinical practice because they provide a quick means to identify needs that help guide individualized care and interventions [200].

Table 1lists and describes some standardized instruments that tap into variables related to families and chronic illness. This is not an exhaustive list; other instruments may be helpful [232,265].

Families who have members with chronic illness require information. This sounds simple, but it is crucial for healthcare professionals to realize that chronic illness is a new and unanticipated event to the family. Therefore, families need concrete information targeted to various timelines [222]. At the initial diagnosis, the family may be overwhelmed and struggling to come to terms with the illness. It may also be grappling to understand new medical jargon and trying to assimilate a tremendous amount of information in order to make decisions about medical care plans. Over time, some family members may be required to take on more responsibilities related to the medical care. This requires practitioners to teach family members necessary skills and to provide support when they feel uncertain about these new responsibilities [153]. At this juncture, the helping professional should assist in enhancing communication between the primary physician and the family [112]. Technical information about the illness, prognosis, and care regimen should be conveyed. Healthcare professionals should be sensitive to the fact that this information may need to be relayed on several occasions. Information and education should be communicated in a lay-friendly and non-hurried manner [222]. During this time, the helping professional may want to begin to coordinate a list of resources and referrals [112].

Over the course of the illness, caregivers and family members continue to need information about how to efficiently care for the patient. The types of information may range widely. Lubkin and Larsen, for example, note that healthcare professionals can provide general information about human development to family members. It is beneficial for caregivers and family members to understand normal changes that are part of human development and the life cycle, changes that are specifically related to the illness, or possibly, an interaction of both [82]. Egocentrism, for example, is a part of adolescence. Chronic illness can magnify this as the adolescent receives a great deal of medical and parental attention, and the adolescent can become overbearing [41]. Yet, simultaneously, an adolescent may believe that he/she is the only one with these problems and feel that no one can empathize [41]. Social isolation may occur. Therefore, it becomes a complicated issue to determine whether a particular behavioral change is the result of normal human development or illness-related.

Technical information related to the daily care of the patient should also be relayed. Family members may have to be taught how to lift and move patients around without hurting themselves or the patient and how to administer medications [82]. Family members should be reminded and educated about the physical consequences of the illness. Patients, for example, may experience fatigue as a result of the medications and/or the illness; however, some family members may become frustrated with the patient and interpret the patient as being lazy and taking advantage of the sick role [82]. Healthcare professionals should be fully knowledgeable about resources on both the local and national level to assist families in coordinating care for both the patient and themselves. Resources and services include places to access special equipment, legal and financial information, respite care, counseling, and support groups [82].

The emphasis is to provide an opportunity for family members to explore their feelings of loss, sorrow, mourning, and grief. Interventions also focus on helping families to accept the ill family member's lost physical functioning and capabilities [32].

Boss and Couden argue for the importance of helping families deal with ambiguous loss [55]. The goal is not necessarily to eliminate this sense of loss, but rather, to increase family tolerance and coping. Interventions are both structural/short-term and solutions-focused as well as psychodynamic [55]. After identifying the loss, the family would work collaboratively to make decisions regarding day-to-day care and activities. Operating from this lens, depression, which is commonly experienced among caregivers, may also be viewed as symptomatic of ambiguous loss. Therefore, practitioners can help encourage caregivers to not assume all the burden of responsibility, but rather to delegate and distribute the work. This may mean obtaining respite assistance [55].

One of the more difficult tasks is for family members to understand and make sense of the ambiguous loss [55]. They can begin by looking at their own family's socialization, spiritual and religious values, and mentality of thinking and viewing the world optimistically, and by evaluating the family's beliefs about mastery [55].

In order to prevent burnout, family members and caregivers should learn to take care of themselves. Caregivers often experience a host of conflicting emotions, including guilt, sadness, anxiety, and exhaustion. They often feel that they should not express negative feelings, believing that it will adversely affect the patient [82]. Healthcare professionals should routinely ask caregivers how they are feeling and coping, and then validate their experiences and feelings.

Caregivers should also be encouraged to obtain respite care. Respite refers to any type of service, either informal or formal, that offers relief and assistance for family members to cope with the challenges of chronic illness [113]. Informal respite assistance may include extended family members, neighbors, and friends who might periodically help with meal preparations, transportation, or housekeeping. Formal respite consists of in-home respite or out-of-home respite. In-home respite care involves a paid companion who spends time with the patient and helps with the patient's care, while out-of-home respite care includes adult day-care centers and community recreational services [113].

Mindfulness interventions may also be beneficial for caregivers. These approaches teach caregivers to be aware of what is occurring at the moment without any judgement and to focus on regulating emotions. In a study to evaluate the effectiveness of an online mindfulness intervention, the level of caregiver burden was decreased after eight weeks of weekly, one-hour mindfulness practice and self-compassion training [187].

In collectivist cultures, one's identity is intertwined with the ill family member, and how the ill family member fares also affects the caregiver [188]. As such, interventions may target the patient and caregiver simultaneously [188].

Based on family systems theory, family therapy can be a useful intervention to assist families in acknowledging and accepting the patient's illness as well as the treatment plan and prognosis [112]. It can help the patient and family understand the illness narratives created by the patient and how this story has affected the family system. The goal is to help each member co- and re-author the illness narrative(s) [223]. It can help families develop coping skills to manage the challenges of the continual stressors related to chronic illness and identify maladaptive family patterns, such as enmeshment, triangulation, overprotectiveness, and rigidity [112,125]. Role expectations can be clarified among family members, and lines of communication can be opened, and at times, restored, if certain family members feel overloaded with caregiving responsibilities [82]. Furthermore, assuming a caregiving role for an elderly parent may resurrect previous developmental issues [154].

Psychoeducational groups were first used in families with members who had schizophrenia; however, they have been adapted for use with other clinical populations. Psychoeducational groups typically involve a didactic and support component, whereby family members (i.e., caregivers) convene for 10 to 12 structured sessions, on a biweekly basis [114]. It assumes that the caregivers are experts and each member can help each other [155]. The didactic component focuses on both cognitive information and behavioral change. Caregivers, for example, listen to a series of mini-lectures that focus on disease etiology, treatment, and management [114]. Problem-solving skills and coping strategies are often discussed. Caregivers are encouraged to use these newly learned skills and apply them at home. The support component of the psychoeducational groups provides a forum for family members to talk about various issues that may come up in the caregiving situation. Facilitators and other family members provide validation and recognition of feelings. Ultimately, when family members feel confident about providing care, their quality of life improves [153]. Psychoeducation that encompasses active participation and learning appears to be more effective compared than psychoeducation interventions solely involving lectures. The use of role playing, practicing of skills, completion of assignments, and group discussions provide a forum for participants to be actively engaged and where they can practice new communication and problem-solving skills [267]. In terms of the research evaluating the effectiveness of psychoeducational groups for caregivers, the findings are mixed. In one study, nurse-facilitated psychoeducational groups for caregivers resulted in no improvements in perceived caregiver burden [189]. But a separate study found participation in distance or in-person psychoeducational groups was associated with improved caregiver distress and burden [190]. A 2023 meta-analysis of 13 trials of Internet-based psychoeducation for caregivers living with an individual with dementia, psychoeducation interventions were effective in reducing depression and stress [268]. However, there was no effect on quality of life, anxiety, and burden.

Support and self-help groups focus on a specific client population (e.g., patients diagnosed with cancer) and related caregiver needs. These groups are facilitated either by volunteers or healthcare professionals. They may vary but will provide information regarding the illness and disease process and symptom management, normalize members' experiences, provide emotional support around caregiving, encourage advocacy, or a combination of these services [82,191]. Trust is a key element for these types of groups [192]. Such groups can also help to improve members' outlook on life, feelings of optimism, and self-esteem [224].

The installation of hope is vital for caregivers so they can look toward the future [269]. Caregivers are often isolated, and therefore, when they come to a support group, they realize that they are not alone, which is known as universality. Theimparting of information is also key, as caregivers in the group exchange information and learn from each other. Altruism is the desire to help others, and caregivers in a support group can feel good that they were able to play a role in helping another groups member. Existential factors, such as loss and death, are inevitable, and support group members can provide comfort and support to their fellow caregivers. Finally, group cohesiveness can provide group members with a sense of belonging, which can be empowering and nurturing. Ultimately, the benefits from support groups can be powerful for caregivers [269].

Findley argues that part of their social justice advocacy role for social workers and other service providers is to challenge issues of marginalization when working with families and family members who have been diagnosed with a chronic illness [145}. This is particularly the case for racial/ethnic minorities and those who are further marginalized based on their socioeconomic status, sexual orientation, gender identity, and other factors that contribute to health disparities. It is important to advocate reducing or eliminating barriers that prevent families and patients from receiving the care and support that they need. Practitioners can also work to promote evidence-based interventions and guidelines to ensure greater collaboration between patients and their family members at the various levels of care [145].