|
| A) | There is no difference since both terms refer to the progression and the phases of a disorder. | ||
| B) | The underlying difference stems from whether the terms are employed by physicians or service providers. | ||
| C) | Disease course involves issues such as quality of life while illness trajectory involves discrete points on the continuum in how the disorder progresses from initial diagnosis to acceptance. | ||
| D) | Disease course refers to the symptoms and the characteristics of the disorder, while illness trajectory emphasizes the social and psychologic issues confronted by patients and families who experience health problems. |
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].
| A) | cerebral palsy is a short-term illness with a rapid recovery process. | ||
| B) | cerebral palsy requires minimal symptom management on the part of the patient. | ||
| C) | cerebral palsy affects the patient's functioning in the physical, psychological, and social arenas. | ||
| D) | cerebral palsy can be analogized to a short-term visitor, who comes and visits and then quickly leaves. |
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]:
Time period: An illness is chronic if it is prolonged (i.e., generally more than 12 months in duration).
Lifestyle: An illness is chronic if it is long-term and affects and interferes with the patient's functioning in the physical, psychologic, or social arena.
Quality of life: An illness is chronic if the symptoms of the illness do not resolve spontaneously and begin to affect the normal activities, roles, and routines of the patient and the patient's family.
Symptom management: An illness is chronic if it involves symptom management. Due to the incurable nature of the chronic illness, symptoms are persistent and long-term, and the patient will be left with residual effects of the condition. Ultimately, the goal is to manage the symptoms on a daily basis.
| A) | Theories are abstract and primarily used for research. | ||
| B) | Knowledge of theories will guide assessment and intervention planning and implementation. | ||
| C) | Theories can help service providers establish rapport, which is the key element in the therapeutic process. | ||
| D) | Knowledge of theories will provide information about the patient's medical care regimen and future diagnosis. |
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.
| A) | Both maturational and situational crises can cause disequilibrium. | ||
| B) | The birth of an infant in a family can be viewed as a maturational crisis. | ||
| C) | Situational crises can stem from the following sources: environment, social or interpersonal, or physical. | ||
| D) | Retirement is viewed as a situational crisis because it is sometimes a predictable component of life. |
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) | Crises permeate family system's boundaries and affect role boundaries and hierarchies. | ||
| B) | The statement is false, as crises are negative and trigger stress, which ultimately yields adverse health outcomes. | ||
| C) | Individuals or families may be more amenable to receiving professional, formal services, which can ultimately result in growth. | ||
| D) | None of the above |
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) | A crisis is usually brought about by a hazardous event. | ||
| B) | A crisis typically elicits minimal emotional responses. | ||
| C) | A crisis progresses through unpredictable stages before resolution. | ||
| D) | A crisis is long-term in nature, lasting about three to four months, and typically requires long-term psychotherapy or intervention. |
The major assumptions of crisis theory are [14; 159; 229]:
Crisis situations are normal. They are not an illness and are not pathologic. They occur throughout the normal life spans of individuals, families, groups, communities, and nations.
Crises are initiated by some sort of hazardous event. This is defined as a finite, stressful blow. It may be either a single catastrophic event (e.g., earthquake) or a series of stressful events that build up a cumulative effect.
The impact of the hazardous event disturbs the individual's homeostatic balance or equilibrium (i.e., state of stability). This hazardous event then places the individual in a vulnerable state. In an attempt to regain equilibrium, the individual will use his/her existing repertoire of coping and problem-solving strategies. If these strategies are not successful, his/her upset or stress increases. The individual may seek new strategies to deal with the crisis.
If the problem continues and cannot be resolved, the tension peaks, and a precipitating factor can bring about a turning point. The individual's repertoire of problem-solving skills is not adequate to take care of the stress. This is the state of active crisis.
During the course of the developing crisis situation, the individual may perceive the initial and subsequent events as a threat, a loss, or a positive challenge.
Each of these perceptions regarding the crisis elicits an emotional reaction. A threat elicits anxiety. A loss may evoke feelings of depression and grief. A challenge may bring forth some anxiety, but there will also be an undercurrent of hope and expectation.
A crisis may reactivate some earlier unresolved conflict, which will exacerbate the crisis situation.
All crises follow a series of predictable stages, which can be mapped out.
Crisis situations are temporary in nature. The total length of time between the initial blow and the final resolution of the crisis may vary. Crisis situations, by definition, are time-limited, usually lasting up to four to six weeks.
During the resolution of the crisis, the individual tends to be open to help. Therefore, minimal interventions can yield maximum results.
During the reintegration phase, new coping and adaptive styles are learned which helps the individual to cope more effectively with other situations at other times. However, if help is not available, maladaptive patterns may be adopted.
| A) | Usually long-term | ||
| B) | Psychodynamically oriented | ||
| C) | Focused on problem-solving | ||
| D) | Driven by feminist principles |
Crisis intervention is based on a problem-solving orientation, where the situation is immediately assessed. The type of assistance is decided upon and a concrete plan of action is implemented. When the client's equilibrium appears to be achieved, the practitioner should reinforce those techniques used by the individual or family unit that helped promote adaptation and coping [17].
| A) | All family systems have generational boundaries. | ||
| B) | Boundaries ensure differentiation of the subsystem. | ||
| C) | Culture, race, and ethnicity influence family boundaries. | ||
| D) | All of the above |
Within this family system there exists family structure and family functioning. Family structure is defined as the organizational patterns or characteristics of the family [21]. Boundaries mark who is in and who is out. The boundaries are semipermeable, so the family system can change and adapt to normative transitional forces (e.g., births, marriages, deaths, divorce). Boundaries also ensure differentiation of the subsystem [21]. Boundaries in families are also marked by generations; that is, all family systems have generational boundaries. Generational boundaries refer to the differences in communication, roles, privileges, and responsibilities between members within different family generations [23]. It is important to remember that culture, race, and ethnicity influence these boundaries. For example, some ethnic groups, such as Latino families, incorporate nonfamily members into the family structure [24]. Some family structures are more highly organized (e.g., the structures of Asian families) where there are clearly defined generational boundaries and roles [25,161].
| A) | roles. | ||
| B) | rules. | ||
| C) | structure. | ||
| D) | functioning. |
All families have rules and roles. Family rules are the expectations for behavior that shape and direct how families function. These rules can be either implicit or explicit. Rules may be manifested in the routines and daily activities of family life. Family roles refer to the beliefs that define how each member should behave and the specific function that each individual plays [23,161]. For example, a mother may assume the primary responsibility of caretaker and nurturer [22]. It is important to remember that the family roles are not only defined by needs or family origin, but also by culture, race, and ethnicity.
| A) | It refers to achieving equilibrium. | ||
| B) | Pre-existing family rules are firmly in place so as to provide an atmosphere of stability. | ||
| C) | This term is synonymous with how individuals in collectivistic cultures tend to establish rapport and close relations with integral support networks. | ||
| D) | This refers to the caregiver becoming closely intertwined with the life of the patient to the point that no clear boundaries can be easily distinguished. |
Family coping behaviors as they relate to family boundaries can also be understood by two concepts—engulfment and balancing/boundary setting [28]. These two concepts can be viewed along a continuum, with engulfment on one end and balancing/boundary setting on the other end. They are not meant to be viewed as absolute, distinct entities whereby an individual's behavior can be clearly classified in one of the two categories. Rather, caregivers often exhibit mixed responses and at times, shift from one end of the continuum to the other [28]. Engulfment occurs when the caregiver subordinates his/her needs and activities to that of the patient with chronic illness [28]. The caregiver is so involved that the physical and psychologic suffering of the patient becomes entwined with the caregiver's. On the other end of the spectrum are balancing/boundary setting, where there is psychologic distance or separation between the caregiver and the patient. In addition, some families also find that they come together to meet the challenges by dividing up the tasks that need to be completed and finding resources and learning new caregiving skills [160].
| A) | first level of meaning. | ||
| B) | second level of meaning. | ||
| C) | third level of meaning. | ||
| D) | fourth level of meaning. |
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].
| A) | Expression of anger | ||
| B) | Increased independence | ||
| C) | Too much control over treatments | ||
| D) | Family and friends becoming overbearing |
Patients with chronic illness experience a variety of fears due to the uncertainty of the prognosis of their illness, difficulties understanding medical jargon, having to adapt to medical regimens and new schedules, and feeling a loss of control over their lives. Pollin highlighted eight fears that a patient with chronic illness experiences [6,35]:
Loss of control
Loss of self-image
Loss of independence
Stigma
Abandonment
Expression of anger
Isolation
Death
| A) | they have bad luck. | ||
| B) | they are being punished. | ||
| C) | it will help them grow into a better person. | ||
| D) | All of the above |
When patients learn of the diagnosis, their worldview collapses. They wrestle to answer questions, such as: "Why did this happen?" "Why me?" and "Who or what is responsible for this?" [31]. Foley asserted that, generally, individuals ascribe various meanings to illness or suffering, including [37]:
Punishment (i.e., having done something to deserve punishment)
Testing (i.e., testing one's faith or character)
Bad luck
Nature merely taking its course
Resignation to the will of God
Acceptance of human condition (e.g., pain, suffering)
Personal growth (i.e., suffering helps one grow, makes them a better person)
Denial
Minimizing (i.e., downplaying the severity of the illness or prognosis)
Divine perspective
Redemption (i.e., finding peace in suffering)
| A) | Chronic illness, and how the patient views it, is influenced by developmental stages. | ||
| B) | Chronic illness may make certain transitions easier by taking the focus off the patient. | ||
| C) | Chronic illness strengthens the family system during developmental transitions so it may continue as usual. | ||
| D) | All of the above |
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.
| A) | The chronically ill youth should limit contact with his/her peers. | ||
| B) | Greater interaction with peers will have positive psychosocial effects on the chronically ill youth. | ||
| C) | The chronically ill youth often times retreats within himself/herself and becomes apathetic to social acceptance of others. | ||
| D) | All of the above |
Adolescence is characterized as a period of confusion and turmoil. Boice noted that one of the main developmental tasks for the adolescent is the search for identity, and those adolescents who achieve a sense of identity will experience well-being—a sense of knowing where they are going and feeling a comfort level with their body. In their search for identity, adolescents wrestle with the perception that they are different from their peers [41]. Social acceptance is one of the major concerns for adolescents. However, often the chronically ill adolescent is isolated from other teenagers and spends a large amount of time with adult caregivers and healthcare professionals. In a study with 3,207 adolescents, those who had a chronic condition were less likely to report positive social connectedness across different contexts (e.g., with family, friends, school) compared with their counterparts with no chronic illness [240]. This is one reason adolescents with chronic illness often welcome returning to school. In a study of adolescents with cancer, participants reported that returning to school represented "being on the right track" to recovery, rebuilding friendships, and regaining their sense of identity [165]. Rejection by and isolation from peers may contribute to even greater stress [41]. Indeed, studies have found that when chronically ill adolescents have frequent peer contacts during their illness, psychosocial outcomes are improved [42,43,44]. And when their healthy counterparts have increased interactions with adolescents who are chronically ill, prejudicial attitudes held by the healthy peers decrease [42].
| A) | Persistent seeking of information | ||
| B) | Fighting for services for the patient | ||
| C) | Deciding to call for a halt to care when they think the patient has had enough with a certain medical treatment | ||
| D) | All of the above |
In addition to assisting with the patient's activities of daily living, Coffey found that caregivers also assume an advocacy role, which entails three elements: vigilance and taking over; negotiating and taking a halt; and tenacious information seeking [9]. While fighting for services and care for the patient was found to be a large part of the advocacy role, taking a halt was equally important. This meant that the caregiver was firm about calling a halt to care when he or she felt that the patient had had enough of a certain medical treatment or intervention. Also important was the need to be assertive in obtaining health information so as to make the best and most informed choices for the patient. Caregivers struggled to balance the fine line between worrying that they might alienate healthcare providers and wanting to ensure the best care for the patient [9].
| A) | is task-oriented. | ||
| B) | entails the use of abstract strategies. | ||
| C) | is targeted at reducing emotional distress. | ||
| D) | views stressful situations as something that must be endured. |
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]:
Wishful thinking
Distancing
Emphasizing the positive
Self-blame
Tension reduction
Self-isolation
Seeking social support
Self-control
| A) | normalization. | ||
| B) | achieving mastery. | ||
| C) | positive reframing. | ||
| D) | embracing the medical model. |
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]:
Embracing the medical model: This strategy focuses on acquiring information about the illness.
Achieving mastery: This mechanism emphasizes managing the symptoms. It is characterized by day-to-day survival rather than trying to understand the situation.
Normalization: This strategy focuses on reducing stigma and establishing a sense of control.
Positive reframing: This coping style emphasizes reframing the loss to acknowledge the ill family member's other positive strengths or attributes.
Religion: This strategy focuses on how the stressful situation is part of spiritual growth.
| A) | Prognosis | ||
| B) | Extent of visibility | ||
| C) | Degree of incapacitation | ||
| D) | All of the above |
Some research indicates that how a family adapts depends more on the characteristics of the illness than on the initial diagnosis. These characteristics include:
Degree and type of incapacitation (e.g., sensory, motor, cognitive)
Extent of visibility of the condition
Prognosis or life expectancy (e.g., is the outlook negative or positive; is it a terminal illness)
Course of the illness (e.g., constant, relapsing, or progressive)
Amount of home treatment, outpatient, and inpatient medical treatment and the expertise needed for the patient
Amount of pain or other symptoms experienced
| A) | Crisis phase | ||
| B) | Chronic phase | ||
| C) | Terminal phase | ||
| D) | Chronic sorrow phase |
Neither illness nor family coping is static; rather, it is dynamic. How a family responds to chronic illness is also a function of the phase of the illness as each phase of the illness has specific demands and transitions, and families will require different strengths, resources, and reorganization to meet these psychosocial demands [47]. Illness phases, as conceptualized by Rolland, can be delineated into three periods: crisis, chronic, and terminal phases [47].
Crisis Phase: This time period includes the symptomatic period prior to the diagnosis and the initial period of coping and adjustment after the diagnosis. Families in this phase must learn to cope with the symptoms related to the condition, navigate the medical and healthcare system, and manage the day-to-day responsibilities of caring for the patient. In addition, patients and family members begin to make meaning of the illness.
Chronic Phase: This phase is characterized as the "long haul," which includes the day-to-day activities and tasks related to caring for the patient and the family's attempt to maintain a semblance of normalcy. Family members reallocate roles and work on maintaining individual autonomy in the family system and not letting the illness define them.
Terminal Phase: This period is marked by the imminence of death, and family members struggle to deal with issues of separation, mourning, and resuming family life after the loss.
| A) | Caretaking activities typically fall into women's domain. | ||
| B) | Women face more types of chronic illness compared to their male counterparts. | ||
| C) | Many of the helping professions, such as nursing and social work, primarily consist of women. | ||
| D) | Most single-parent homes are predominately headed by women, and when chronic illness strikes, single mothers often find that they need to find another job to help meet expenses. |
Gender is another important variable that influences how a family responds to chronic illness. The term "feminization of care" refers to the notion that most women are caregivers and expected to provide caregiving duties [66,176]. Traditionally, women are socialized to be natural caregivers in many cultures [251]. Wives, daughters, and even daughters-in-law are expected to provide care to family members [251]. When fathers are primary caregivers, they tend to be given the positive label of "responsible caregivers," but this same positive attribute is not given to female caregivers because this role is expected of them [252]. Women who work full-time are more than four times as likely as men who work full-time to be primary caregivers to elderly parents [67]. The competing demands of balancing full-time work, caring and nurturing their own children, and maintaining their own homes contribute to the caregiving stress and burden on women. According to Short, adult daughters are more likely to care for their frail elderly parents, and they provide 33% of the long-term care; 75% reside with the frail elderly parent to provide the care, and on average, the majority provide some sort of care and assistance every day for at least four hours [69]. The caregiver burden may also threaten women's financial security as a result of their having to leave the workforce [138]. Women typically do more hands-on caregiving tasks and spend more hours providing caregiving compared with men [139].
| A) | spiritual style. | ||
| B) | deferring style. | ||
| C) | self-directing style. | ||
| D) | collaborative religious coping style. |
Pargament identified three types of religious coping [78]:
Self-Directing Style: The individual who uses this coping style does not involve God in the process at all.
Collaborative Religious Coping Style: The individual and God work together to solve the problem.
Deferring Style: The individual waits passively for God to intervene.
| A) | Care provider | ||
| B) | Care manager | ||
| C) | Formal caretaker | ||
| D) | Multi-tasked caregiver |
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].
| A) | it is politically correct to take into account culture, race, and ethnicity. | ||
| B) | medications for illnesses have different reactions among different groups. | ||
| C) | ethnic minority families are more likely to respond pathologically to stressors inherent to chronic illness. | ||
| D) | ethnic minority groups are growing rapidly in the United States and, as a result, service providers will work with multicultural patients with varying needs. |
More recently, there has been a concerted effort in research literature to examine the role of culture, race, and ethnicity in caregiving and caregiving burden. In part, three factors or trends have contributed to a more systematic cross-cultural examination in this area. First, the United States is becoming increasingly multicultural. Demographic trends indicate that ethnic minorities are rapidly growing. By 2060, it is estimated that the African American population will increase to 74.5 million and the Hispanic population will increase to 119 million [144].
Second, the number of older adults in the United States is projected to grow to 27.7 million by 2040 [266]. Chronic illness is often associated with older adults. In addition, certain chronic illnesses, such as heart disease and hypertension, are found in exceedingly higher rates in African American populations [89]. Consequently, it is crucial to examine the role of culture, race, and ethnicity and its impact on caregiving.
| A) | Caregiving tasks are usually assumed by one person within the family. | ||
| B) | There is usually an expectation that women will provide caregiving duties. | ||
| C) | Hispanic caregivers often utilize formal services to cope with stress rather than relying on family. | ||
| D) | Independence is highly valued in Mexican culture, making it difficult to find a caregiver within the family. |
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].
| A) | African Americans are less likely to use nursing homes. | ||
| B) | Caregiving in African American families tends to be wider in scope. | ||
| C) | African Americans are more likely to provide caregiving to immediate family, as well as extended family. | ||
| D) | All of the above |
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].
| A) | Sekentei induces daughters-in-law to bond with their husbands' families, which yields to family loyalty. | ||
| B) | Sekentei has facilitated the growth of many culturally sensitive care facilities to help with caregiving. | ||
| C) | The notion of sekentei is equated with collectivism, which espouses elevating others' needs relative to one's own needs. | ||
| D) | Sekentei refers to the concern with how and what others might think if one does not care for one's family members. |
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].
| A) | refer to a family therapist. | ||
| B) | highlight the relationships and roles among family members. | ||
| C) | identify the primary caretaker of the patient in order to quickly refer him/her to a support group. | ||
| D) | detect rituals that families perform that may negatively impact the patient's health and well-being. |
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]:
Who helps out when needed?
To whom do family members turn for assistance?
Who would you say is the caregiver or caregivers for the patient? What types of tasks and activities are provided by the caregiver(s)?
Who in the family can take on and adapt to new roles easily?
Who in the family is seen as the strong one? The dominant one? The submissive one?
Who is close to the patient?
| A) | provide a sense of historical continuity. | ||
| B) | do not have established psychometric properties. | ||
| C) | are viable assessment tools for healthcare professionals. | ||
| D) | allow for different procedures to be applied based on patient characteristics. |
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].
| A) | restoring equilibrium to families. | ||
| B) | emphasis on uncovering past conflicts. | ||
| C) | providing both information and support to families. | ||
| D) | developing a network of local and national resources for families. |
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.