Preparedness

Preparedness, which originated within role theory, refers to how ready caregivers perceive they are for the tasks and demands of the role. Preparedess is an assessment of the caregiver's readiness to provide care in contrast to their adequacy to provide care (Schumaker et al., 1998). Caregivers who perceive they are well prepared where they have the relevant support, skills, and knowledge have been shown to also have decreased levels of depression. Conversely, carers who perceive they are inadequately prepared are prone to greater levels of burden including increased strain and tension (Archbold et al., 1990; Nolan et al., 1996, p. 122).

Mastery

Mastery is a concept that refers to the control a person perceives they have over an important event in their lives (Aneshensel et al., 1995). A sense of mastery over a stressor may occur through the development of new capabilities, modification of the environment, and/or finding a sense of meaning or purpose that transcends the difficult experience. The core elements of mastery are a sense of control, enhanced self-esteem, and discovery of alternative sources of satisfaction. If mastery is achieved, then the individual is perceived as more efficacious and stronger, with more endurance and a more positive outlook. Conversely, if a sense of mastery is not acquired, a state of stress is maintained, as the individual perceives a discrepancy between the demands of the experience and the adequacy of their available resources (Younger et al., 1995). Mastery has been shown to be negatively related to depression and sense of well-being and is a useful predictor of role strain (Aneshensel et al., 1995; Miller et al., 1995; Yates et al., 1999). Miller et al. concluded that mastery may represent secondary appraisal, and supported efforts to operationalize this concept through further research. In particular, they valued a more explicit account of the ways in which a sense of mastery differed from self-efficacy and other similar variables. A measure of mastery provides an outcome criterion for interventions aimed at reducing stress, promoting health, and enhancing quality of life (Younger, 1993).

Competence

Competence refers to the perceived adequacy of an individual's performance as a caregiver. Caregivers who have previous caregiving experience and/or have a professional caregiving background are likely to adapt more quickly. Those without this experience are more likely to take on the role in a trial-and-error fashion (Nolan et al., 1996). As with mastery, competence may be regarded as a component of the self-concept. However, contrary to mastery, which is an overarching or global component of the self-concept, competence relates to the caregiver's perception of self specifically as a caregiver (Schumaker et al., 1998). Both competence and mastery are therefore important mediating factors within the context of caregiving (Nolan et al., 1996). The direct relationship of competence to other caregiving variables appears to be underexplored (Nolan et al., 1996).

Self-efficacy

Self-efficacy relates to people's belief that they can initiate courses of action to manage a situation. Self-efficacy differs from global concepts such as self-confidence or self-esteem. It is concerned with an individual's ability to manage specific situations. “Self-efficacy is posited to determine whether coping behaviors will be initiated, how much energy will be expended, and how long they will be sustained in the face of obstacles and aversive experiences” (Zeiss et al., 1999, p. 222). Self-efficacy theory suggests that individuals act if they believe that a particular behavior is likely to lead to desirable results and if they are fairly confident in their ability to perform the task or behavior. Because self-efficacy is not a general personality trait, it is reactive to change and can be enhanced. The aim of self-efficacy training is to shift individuals from feeling powerless to feeling in control. Research shows that self-efficacy is a powerful predictor of actual behavior (Schmall, 1995, p. 159).

Self-efficacy within the context of caregiving relates to how well the carers perceive they are managing certain elements of the role. In a fashion similar to caregiving mastery, self-efficacy stems from cognitive appraisal theories of stress and coping and mediates the relationships between stressors and outcomes. A pivotal difference between caregiving mastery and self-efficacy, however, relates to specificity. Mastery deals with an overall evaluation of how caregivers perceive they are managing, whereas self-efficacy relates to the caregivers' belief in how they are dealing with specific caregiving tasks and problems (Schumaker et al., 1998). According to self-efficacy theory, various tasks associated with the caregiving role will be taken on if individuals perceive they have a high sense of care-taking efficacy. Furthermore, high self-efficacy should be a key predictor of persistence in the caregiving role without the development of debilitating emotional reactions (Zeiss et al., 1999).

Depression, anxiety, low self-esteem, helplessness, and pessimistic thoughts are associated with a low sense of self-efficacy. A strong sense of self-efficacy, however, encourages individuals to take on more challenging tasks, enhances motivation and effort, and allows people to continue in the pursuit of meeting desired goals (Shaw, 1999). Caregivers with higher self-efficacy report less depression and lower burden (Zeiss et al., 1999).

The concept of self-efficacy is so well supported that it is considered a crucial component of any theory aimed at explaining health behavior. It is also regarded as a key variable in clinical, developmental, social, educational, personal, and health psychology (Shaw, 1999). Self-efficacy is viewed as one of the most valued self-report instruments in research (Schumaker et al., 1998) and is recommended as a key variable in future studies assessing the impact of caring (Lovett & Gallagher, 1988).

Anxiety, Depression, and Psychological Distress

A variety of negative psychological sequelae among caregivers has been identified and include depression, reduced self-esteem, feelings of isolation, mental fatigue, guilt, anticipatory grief, and anxiety (Cheng et al., 1994; Kinsella et al., 1998). Rates of psychological distress for spouses of palliative care patients have ranged between 18% and 35%, and, moreover, this distress has occurred for up to 18 months (Kissane, 2000). Payne et al. (1999) interviewed 39 caregivers and identified that 33 of them (84%) scored above a predetermined threshold for psychosocial distress.

During the final year of a cancer patient's life the prevalence of anxiety and depression among caregivers is considerable, albeit variable. A study in Ireland involving 508 family members of patients referred for palliative care revealed that at the time of referral, 32% of participants were experiencing severe or overwhelming anxiety. During the last week of care, anxiety was still severe for 26% of participants (Hodgson et al., 1997). A study of anxiety and depression in 120 spouses of patients with a primary cancer diagnosis showed that 18% had significant anxiety and 6% had significant levels of depression (Glasdam et al., 1996). Addington-Hall et al. (1992) reported that 39% of palliative caregivers (N = 118) were considered to be depressed and 46% were deemed to be anxious. Aranda and Hayman-White's (2001) research involving 33 caregivers of cancer patients dying at home revealed that 21% were confronted with moderate to severe depression. Anxiety levels were higher than population norms and did not tend to decrease over time.

Depression has also been shown to be higher among caregivers than in general populations. Furthermore, depression is higher among women, who make up a clear majority of the caregiving population (Yates et al., 1999). Fifty percent of caregivers of hospice patients (N = 80) were identified as being in the clinically depressed range (Haley et al., 2001). Borneman (1998) posits that caregiver depression may occur as a result of the constant and intense nature of caregiving, where there is little reprieve and a common loss of a meaningful future complicated by a lack of knowledge about how to minimize stress levels. Unrelieved patient symptoms may be associated with caregiver depression (Given et al., 1992). Caregivers often feel very helpless, despite their best efforts, if symptoms persist (Ferrell, 1998).

Ramirez et al. (1998) suggest that anxiety may be minimized if caregivers are well informed, postulating a relationship between level of information and level of anxiety, as they are able to make educated decisions about managing the physical, emotional, and social aspects of their experience. Family caregiver depression and anxiety should be assessed, for if it is ignored, the effect of supportive interventions may be compromised.

Social Support

Social support can be defined as “the existence or availability of people on whom we can rely, people who let us know that they care about, value and love us” (Saranson et al., 1983, p. 127). While definitions vary, it is generally accepted that social support is a multidimensional concept (Bloom, 2000). Categories of social support include (1) informational support: whereby the provision of knowledge lessens the impact of a previously perceived harmful or threatening event, (2) instrumental support: specific assistance from others which is viewed as helpful, (3) emotional support: being able to share thoughts and feelings, and (4) esteem support: whereby a person's sense of self-worth is bolstered by other people (Bloom, 2000).

Social support can be considered a mediator of secondary appraisal. It is generally accepted that people with high levels of social support tend to have greater capacity to mentally and physically respond to stressful events (Shaw, 1999). Social support assists with positive adjustment and personal development and provides a buffer against the impact of stress (Saranson et al., 1983). Saranson et al.'s research revealed that those individuals with perceived high levels of availability and satisfaction with social support reported greater self-esteem and more positive events in their life and perceived a more optimistic outlook than those with low levels of social support. Studies related to caregivers of cancer patients also identify an association between perceived levels of social support and psychological and physical adjustment (Kinsella et al., 2000). It is likely that social support, both during and after the patient's terminally ill phase, is conducive to grief resolution for surviving family members and friends (Yancey et al., 1990)

Understandably, close personal relationships may not always produce positive outcomes. Within the context of caregiving, caregivers and patients may lack congruence in their appreciation of what constitutes support. Maybe the advantages of social support have been exaggerated, as families themselves are potential causes of stress (Nolan et al., 1996). This argument fits neatly within the stress-coping model, as it reinforces the power of an individual's appraisal of circumstances.

Information

The aforementioned definition of social support recognizes that information can be considered as a key element of support. Derdiarian (1989) promotes the importance of information in the coping process using Cohen and Lazarus' (1979) framework. Derdiarian elucidates the tenets of this theory and applies them to the cancer caregiving context. Derdiarian reported that information seeking is considered the most primary of coping modes when a person is confronted with an unfamiliar situation. Through information seeking, the individual assesses potential problems and identifies what needs to be done to deal with them. Derdiarian posits the view that information provision increases motivation to make decisions and assists an individual to prepare for coping with stressful events. Thus, if information needs are met, then caregivers may cope much more effectively.

People are likely to feel disempowered when they lack adequate information on which to base their decisions (Small & Rhodes, 2000, p. 71). Nolan et al. (1996) revealed that 85% of carers of Alzheimer patients reported finding as much information as possible about the problem was the most useful strategy to assist them in responding to their role. Information is an important aspect of coping for home caregivers of terminally ill family members. It helps decrease anxiety and increase control (Tringali, 1986; Grbich et al., 2000). Information provision may not be a helpful coping resource if delivered in a manner that is not best suited to the individual's needs (Lilja et al., 1998). The potential negative effects of information provision to family caregivers appear to be underexplored.

Rewards

To adequately determine how and why caregivers respond in certain ways, an assessment of the potential benefits or positive aspects of the role is advised (Lawton et al., 1989; Nolan et al., 1996; Folkman, 1997; Kramer, 1997). Otherwise there is a danger of pathologizing caregiving and inadvertently socializing caregivers to expect burden (Gaugler et al., 2000). Intervention studies have focused almost exclusively on lessening negative aspects of caregiving. It may be that interventions do as much to increase satisfaction derived from caregiving as they do to reduce problems (Toseland & McCallion, 1997).

Many studies, (predominantly aged care/dementia populations) indicate that at least 80% of caregivers experience some elements of caregiving as satisfying (Nolan, 2001). Scott (2001) reported that only 2 subjects from a sample of 24 family caregivers of patients with life-threatening illness could not report any satisfaction associated with the role. Haley et al. (2001) revealed that the majority of caregivers (N = 80) of cancer and dementia hospice patients reported positive consequences of caregiving. The term gain is also utilized to represent “any positive affective or practical return that is experienced as a direct result of becoming a caregiver” (Kramer, 1997, p. 219). Satisfactions, gains, and/or rewards are considered to be powerful mediators as they are postulated to protect caregiver well-being. Common types of satisfactions posited include seeing the patient contented and happy, giving pleasure to the patient, receiving love and affection from the patient, helping the patient overcome difficulties, and obtaining competence and mastery associated with caregiving (Nolan et al., 1996).

Meaningfulness

If a caregiver perceives the role as meaningful, whereby it is considered to be a worthy investment or challenge, then this may play an important part in enhancing the caregiver's ability to deal with the situation at hand. Meaning in response to caregiving may originate from pathways, including creative routes (perhaps through development of new skills), attitudinal routes (via an inquiry into personal beliefs and values), and experiential routes (via feelings and relationships; Nolan et al., 1996). Meaning may also be created through the pursuit and attainment of goals (Folkman, 1997). Existential beliefs allow some people to construct meaning and maintain hope in unfavorable circumstances (Lazarus & Folkman, 1984). “Personal meanings are the most important aspects of psychological stress with which the person must cope, and they direct the choice of coping strategy” (Lazarus, 1993, p. 244).

Positive Emotions

Folkman (1997) explains this feeling state in terms of positive reappraisal, whereby cognitive strategies are employed to reframe the stressful situation in a positive vein. Folkman's research confirms that, despite caregivers being confronted with an extremely stressful encounter, many will experience positive emotions. Some participants early in her study actually advised the researchers to ensure that they asked about the positive aspects in order to obtain a more accurate picture of how they coped. Positive meaningful events were acknowledged in 99.5% of 1794 interviews. Half of these events were planned and the remainder unplanned. Examples of positive meaningful events included having a meal, appreciative feedback from a peer, and acknowledging a beautiful flower. Events such as these were turned into positive experiences not only momentarily but also stored in participants' memories. Caregivers who cannot identify any positive aspects associated with their role are likely to be at a breaking point and hence should be targeted for appropriate interventions (Nolan, 2001).

Optimism

Some caregivers may view their role through the eyes of an optimist, whereby the experience is viewed in more sanguine terms. Optimism buffers some potentially negative aspects related to caregiving. Furthermore, this concept may prove to be a powerful predictor of which caregivers are more likely to respond favorably to the role (Given et al., 1993; Kurtz et al., 1995). It seems, however, that optimism is a general characteristic, that is, optimists are generally optimistic and their positive outlook is not necessarily dependent upon certain circumstances or settings (Scheir & Carver, 1985).

Mutuality

Mutuality within the context of caregiving describes the degree to which a caregiver finds gratification and meaning within their relationship with the patient. It also encompasses the caregivers' perception of the patient reciprocating by virtue of their existence. Mutuality appears to be a stable concept, and so low levels of mutuality may be irreversible (Archbold et al., 1990).

High levels of mutuality assist caregivers to cope and continue caregiving despite objectively arduous situations. Conversely, low mutuality is associated with poor caregiving reactions even when objectively the scenario appears unproblematic (Archbold et al., 1990; Nolan et al., 1996). Furthermore, caregivers with high mutuality report less role strain (Archbold et al., 1990). Archbold et al. believe that health professionals providing home care should include the quality of the caregivers' relationship to the patient in their assessment and, where low mutuality is detected, they should help the family explore alternatives to direct care provision. Similarly, Nolan (2001) proposes that mutuality should routinely be assessed and believes that, where mutuality is very low, a review of the appropriateness of the ongoing caregiver role should be undertaken.

Respite

If caregivers believe that their social interactions will be threatened by their role, then they are more likely to perceive the role as stressful. Encouraging caregivers to get involved in activities outside of the role can be a more powerful stress-reduction strategy than physical aid or instrumental support. Approaches that involve maintenance of interests external to caring, relaxation, and time for oneself may be very helpful (Nolan et al., 1996).

Cultural Factors

There is inadequate research within the context of caregiving in palliative care to make propositions about the cultural issues associated with caregiving (Pasacreta & McCorkle, 2000). However, evidence with caregivers of other patient populations suggests that cultural background may play an important role in family stress and coping processes (Kinsella et al., 2000).

Caregiver Burden and Health

In studies on caregiving outcomes, two general dimensions of health are distinguished, namely psychological and physical health (Nijboer et al., 1998). A relationship between poorer health status, burden, and depression has also been established (Kinsella et al., 2000). Not surprisingly, those caregivers with existing stressors in their lives may be most susceptible to the demands of caregiving and are at greatest risk of negative psychosocial consequences (Sales et al., 1992). It is also presumed that those caregivers who have ongoing physical or psychological difficulties prior to commencing the carer role may be potentially disadvantaged. Caregiver burden refers to psychological, emotional, physical, financial, or social problems experienced by families or friends (Given et al., 1992).

Choice and Commitment

People who acknowledge a genuine choice in becoming a caregiver have reported less burden (Nolan et al., 1996). This is not surprising as, presumably, few people would respond favorably to caring for a dying relative or friend on a day-to-day basis if they had no say in the matter. As noted in the discussion on mutuality, it is acknowledged that choice with regard to caregiving is probably highly influenced by the relationship between the caregiver and care recipient. Those who choose to involve themselves in caregiving often do so with a strong commitment to the role. Lazarus and Folkman (1984) highlight the relevance of level of commitment to appraisal, arguing that commitment affects appraisal by guiding people into or away from situations that threaten, harm, or benefit them.

Patient's Disease Status, Level of Dependency, and Duration of Illness

There is much debate as to whether or not the potential distress associated with caregiving relates to the nature and extent of the patients' impairments (Zeiss et al., 1999). The site of cancer, for example, may not be overly important. Although studies of caregivers of brain cancer patients have shown considerable family disturbance, this may be attributable to the severity of symptoms and not necessarily the cancer itself (Sales et al., 1992). Whereas some studies reveal that illness duration is associated with increasing strain, others failed to find this association (Sales et al., 1992).

If the patient is adjusting well, then less psychological disturbance may be experienced by family caregivers (Sales et al., 1992). Similarly, as patients' needs lessen, caregivers tend to perceive fewer burdens associated with caregiving (Kurtz et al., 1995; Miaskowski et al., 1997) and may need fewer formal supports (Winslow, 1997). However, caregiving reactions may have less to do with the actual tasks, amount of care, or patient dependency and more to do with the appraisal of these tasks by the caregiver and the meaning attached to the caregiving situations (Yates et al., 1999; Aranda & Hayman-White, 2001; Cameron et al., 2002). There is emerging evidence that the number of new caregiving demands rather than the total number of caregiving demands may have greater influence on depression (Given et al., 1999). These latter perspectives accommodate the theory of appraisal processes referred to previously.

Caregiver Age, Gender, and Sociodemographic Status

Aging family members tend to have more trouble dealing with the tasks and physical demands of their spouses' illness, whereas the greatest difficulties of younger caregivers are in the affective domains (Sales et al., 1992). However, there is currently insufficient evidence from which to draw accurate conclusions (Kinsella et al., 1998).

Evidence related to the impact of gender on the appraisal process appears to be contradictory. Some studies document greater distress in female family members (Sales et al., 1992), whereas others suggests that male caregivers have a higher risk of experiencing burden than female caregivers (Schumacher et al., 1993). Also, Nolan et al. (1995) note that, although the literature is underdeveloped and equivocal, it is the received wisdom that men are generally seen to cope more effectively. However, their results suggest that such “truisms” do not stand up to empirical scrutiny. One answer may be that men and women react differently to aspects of the caregiving role or express burden and distress in different ways. Men may tend to be more concerned about finances and role changes. Once again, more research in this area is required (Kinsella et al., 2000).

Families with low socioeconomic status and those with less education may feel more threatened by the patient's illness (Sales et al., 1992). Research with caregivers of people with dementia suggests that those with lower socioeconomic status may be less aware of and less likely to take up health care services (Kinsella et al., 2000). It seems that employment demands can be attributable to negative outcomes in some circumstances and result in positive sequelae for others. Caregivers who maintain their employment may view this experience as a form of respite (Kinsella et al., 2000).

The foregoing overview identifies the key factors influencing the manner in which caregivers respond to their experience. It is probably the caregivers' unique comprehension of the meaning attributable to the caregiving situation that is more likely to define responses than demographic, personality, or patient characteristics (Oberst et al., 1989). It would be inappropriate, however, to discount the potential influences of these factors. Caregivers who view their situation as a challenge rather than a harmful experience are less likely to be overburdened (Nolan et al., 1996). The variables likely to influence the appraisal process in terms of a challenging rather than harmful response include caregivers' levels of self-efficacy, social support, competence, and mastery (Aneshensel et al., 1995; Lazarus & Folkman, 1984; Nolan et al., 1996). Caregivers who identify positive emotions despite the sometimes demanding implications of caring also appear to perceive their experience as less harmful (Folkman, 1997).

In summary, there are numerous and diverse coping strategies employed by caregivers (Nolan et al., 1996). An appraisal of the caregiving situation in positive terms is likely to be heavily influenced by the caregiver's perception of control over his or her environment, a sense of support, and a perception that they have the necessary skills to confront problematic situations. In addition, caregivers who can find a sense of purpose or meaning associated with their experience are less likely to be overburdened. Therefore, to lessen the negative implications of caregiving, these particular variables should be considered when health care professionals design new supportive family caregiver interventions.