Coping among the caregivers of patients with schizophrenia

Abstract

Coping is understood as the process of managing external or internal demands that are considered as taxing or exceeding the resources of the person. There is no formal classification of coping strategies, and these are understood as adaptive versus maladaptive and problem focuses versus emotion-focused. Understanding the commonly used coping strategies in a particular group of subjects can provide valuable insights for designing interventions to reduce the stress. In this review, we look at the literature which is available with regards to the coping strategies used by the caregivers of patients with schizophrenia. Findings suggest that caregivers of patients with schizophrenia use mixed type of coping mechanisms to deal with the stress of caregiving. The coping strategies are shown to have association with variables such as caregiver burden, caregiving experience, expressed emotions, social support, psychological morbidity in the caregivers, quality of life of caregivers and psychopathology in patients. One of the major limitations of the literature is that there is a lot of variability in the assessment instruments used across different studies to assess coping.

Schizophrenia is perhaps the most dramatic and tragic manifestation of mental illness known to mankind. The consequences of the illness for the individual affected, his or her family, and society in general are devastating.[1] This illness places a huge burden not only on the individuals afflicted, but also the people closest to them, termed caregivers, who live with the individuals, interact with them regularly and lend a helping hand in their day to day activities. Caregivers may experience considerable amount of distress themselves and may have a poor quality of life (QOL) if they are unable to cope with the stress associated with the process of caregiving. Accordingly, it is important to evaluate and understand the coping strategies used by the caregivers of schizophrenia.

In this article, we discuss the concept of coping and evaluate the various studies which have evaluated the coping strategies of caregivers of schizophrenia.

CONCEPTUAL ISSUES RELATED TO COPING

Coping is understood as the process of managing demands (external or internal) that are appraised as taxing or exceeding the resources of the person.[2] It is seen as a process involving at least two stages: Primary appraisal (is this something to bother about?), and secondary appraisal (what can I do about it?).[3] It is proposed to serve two distinct purposes: To do away with the problem (i.e., problem-focused coping), and to regulate emotional reactions (emotion-focused coping).

When one attempts to trace the history of concept and measurement of coping, it is evident that the research in the area came through the line of research, which focused on assessment of defense strategies. However, in 1960s, the research in the area of coping started to develop as an independent concept and crystallized. During this time, a number of researchers began to label certain “adaptive” (example humor, sublimation) defense mechanisms as coping activities.[4,5] Initially, the research on coping strategies focused on coping reactions to life-threatening situations or traumatic life events. Gradually the research in the area of coping in 1970s and 1980s suggested that coping patterns were not influenced greatly by the person factor and resultantly research started focusing on the situational context in which coping took place.[6] Due to this many authors started focusing on the situational factors, which determine coping responses, and some researchers focused on the other factors, which determined the use of coping that is, cognitive appraisal of stressful situations. Gradually the authors described that many psychological factors like self-esteem and self-efficacy and environmental factors like social support network, financial resources and education also influence the process of coping.[7,8] Later based on the importance given to the predisposing factors (traits) and situational factors, two broad categories of coping were discussed in the literature that is, inter-individual coping and intra-individual coping. The inter-individual coping styles were understood as the basic coping strategies which are habitually used by a particular person in a broad range of stressful situations. Intra-individual coping styles were understood as the basic coping behaviors which have an indirect effect on health by creating a change in some health related behavior.[9,10] The intra-individual coping measure, which influenced the research in this area to a great extent, was the ‘ways of coping checklist’[6] later revised and renamed as ways of coping questionnaire.[11]

As such there is no formal classification of coping strategies or skills. Some authors have categorized coping as adaptive or positive coping and maladaptive or negative coping.[12] Others have classified coping as problem-focused coping and emotion-focused coping.[2] Weiten et al.[13] described three broad types of coping strategies, which include appraisal-focused, problem-focused and emotion-focused coping. The appraisal-focused copping is directed toward challenging one's own assumptions, whereas the problem-focused coping strategies are directed toward reducing or eliminating a stressor. The emotion-focused coping strategies are directed toward changing one's own emotional reaction. Appraisal-focused is considered as adaptive cognitive coping and involves the way one thinks about the situation. Some of the appraisal-focused copings include denial, distancing, humor, etc., Problem-focused coping is considered as adaptive behavioral coping and involves dealing with the problem. The problem-focused coping strategies identified by Folkman and Lazarus[14] are taking control, information seeking, evaluating the pros and cons, anticipation (proactive coping) and seeking social support (social coping).

Emotion-focused coping is basically involves the management of emotions that accompany the perception of stress so that the distress can be minimized, reduced or prevented. Folkman and Lazarus[14] identified disclaiming, escape-avoidance, accepting responsibility or blame, exercising self-control, and positive reappraisal as emotion-focused coping. Some of the other coping strategies which can also be categorized as emotion-focused include distancing, self-medication, dissociation, etc.[6,15] It is said that emotion-focused coping strategies are well suited for stressors over which the sufferer has no control, for example, a terminal illness diagnosis or the loss of a loved one. Emotion-focused coping is further divided into positive and negative, mainly based on their relationship with the outcome. Negative emotion-focused coping, such as distancing or avoidance, can reduce distress in the short run, but in the long run, these are considered to be detrimental and hence maladaptive or negative. On the other hand, positive emotion-focused strategies, such as seeking social support and positive reappraisal are understood to be associated with a better outcome.[16]

It is generally said that every person uses a mixture of problem focused and emotion-focused coping strategies and skills, which tend to change over time. It is said that use of any type of coping, that is, problem focused or emotion-focused can be useful, but some researchers suggest that use of problem focused coping is associated with better adjustment in life as these allow a person to perceive higher control over the problem, compared with that of emotion-focused coping.[17]

STUDIES EVALUATING THE COPING STRATEGIES OF CAREGIVERS OF PATIENTS WITH SCHIZOPHRENIA

Coping research in caregivers of schizophrenia has mainly focused on its relationship with other variables like burden, psychological distress/psychological morbidity, expressed emotions and psycho-pathology in patients, social support, sociodemographic variables of patients and caregivers and clinical variables and illness perception.

Commonly used coping strategies

Because of the differences in the assessment scales used in various studies it is difficult to compare the findings of the various studies. One of the studies which used family coping questionnaire reported that more than half of the caregivers used seeking information, positive communication, patient's social involvement and resignation coping strategies.[18] In another study based on the family coping questionnaire, social involvement of the patient and positive communication as coping strategies were most frequently reported by both key relatives and other relatives.[19] In the study which evaluated coping by using combination of three coping frameworks, that is, cognitive or behavioral, social or nonsocial, problem-focused or emotion-focused suggested that relatives more often used behavioral coping responses than the cognitive ones, more social than nonsocial responses and more emotion-focused than problem focused coping responses.[20] Other studies have reported most frequent use of problem focused coping,[21] self-controlling, positive reappraisal and escape-avoidance coping.[22]

Many studies from India have evaluated the coping of caregivers of schizophrenia. These studies suggest that caregivers employ a mixture of both adaptive and maladaptive coping strategies to cope with the patient's illness.[23,24,25,26,27,28,29,30,31,32] In terms of most commonly used coping strategies, studies suggest that caregivers most commonly use coping like consulting doctors, talking to friends/family and seeking practical help.[26] Other studies have reported more frequent use of problem focused coping strategies than seeking social support and avoidance strategies.[24,32] Another study, which was based on family coping questionnaire, reported that the resignation was the most commonly used coping strategy, used by 71% of the caregivers. Only about one-fifth to two-third of the caregivers used coping strategies like seeking information (40%), positive communication (37%), social interest (21%), coercion (32%), avoidance (35%) and patient's social involvement (34%).[30] Two studies used coping checklist devised by Rao et al.[33] to assess the coping strategies. One of those studies found that caregivers, who were parents of the schizophrenia patients, used denial more often as a coping strategy whereas spouses most commonly used negative distraction. In another study done on caregivers of mentally ill patients, positive cognitive coping was the most commonly used coping strategy, followed by distraction and problem-solving strategies.[34] Based on another coping instrument one study reported fatalism and problem-solving as the two most commonly used coping strategies by the caregivers.[31] Few studies have also compared the caregivers of patients with schizophrenia and bipolar disorder and these suggest that caregivers of patient with schizophrenia more frequently use emotion-focused strategies (coercive coping and a behavioral avoidant strategy). On the other hand, compared to the caregivers of patients with schizophrenia, caregivers of patients with bipolar disorder more frequently used problem focused strategies.[25,26]

Relationship with burden

Burden is the most commonly researched correlate of coping. As with coping research, the results again vary from one study to the other, mainly because of use of different instrument to assess the burden and coping. In a longitudinal study, authors reported reduction in family burden over time among relatives who adopted less emotion-focused coping strategies, that is, reduced their avoidance of the patient and became less resigned. In addition, a reduction in the burden was associated with an increase in positive attitudes toward the patient and among those who received more practical support from their social network.[35] Studies have consistently shown correlation between burden and use of emotion-focused coping strategies by key and other relatives.[19,21,36,37,38,39] Budd et al. reported about specific emotional-focused coping strategies and noticed that collusion, emotional over-involvement, criticism-coercion and overprotectiveness correlated positively with various measures of burden, indicating that these four apparently maladaptive coping styles are strongly associated with increased levels of carer burden.[36] In the same study resignation as a coping mechanism correlated with higher levels of subjective and objective burden. Among the apparently adaptive coping styles, only warmth was significantly correlated with any of the measures of burden. Other emotion-focused coping strategies reported to be associated with the burden include avoidance,[21,40] resignation,[40,41,42] reduction of social interests and coercion.[40] Khajavi et al.[38] found a positive relationship between the extent of burden and use of emotional-centered, low effective and ineffective coping approaches. However, some of the studies have reported no relationship between coping and burden.[22]

In terms of the relationship of coping and burden studies from India suggest that levels of caregiver burden correlate positively with resignation, avoidance, seeking information and using drugs and alcohol.[25] In another study, avoidance coping showed a positive correlation with the total burden scores and a number of burden factors like physical and mental health, caregiver's routine, taking responsibility, other relations, patient's behavior, and with the total burden score.[32] Another study reported caregiver's use of denial as a coping strategy, as assessed by coping checklist by Rammohan et al., to be a significant predictor of burden as assessed on burden assessment schedule.[29] One of the recent studies reported positive correlation of burden as assessed by family burden interview schedule (FBI) with avoidance and coercion as coping.[28] Studies based on family coping questionnaire suggest a positive correlation between resignation as a coping strategy and higher level of burden.[30] Another study suggests that use of problem-focused coping, that is, problem-solving, and expressive-action decreased the burden of caregivers while emotion-focused coping, that is, fatalism and passivity were associated with a higher burden.[31] One study used involvement evaluation questionnaire (IEQ) to assess the burden and reported that higher use of problem-focused coping was associated with subjective caregiver burden as assessed by IEQ. Seeking social support was associated with total IEQ score and worry urging – II domain of IEQ. Use of avoidance, collusion and coercion were associated positively with tension domain of IEQ. Taken together total coping checklist score along with general health questionnaire (GHQ) score explained 16.5% variance of burden as assessed by using IEQ.[6] Other studies have reported no relationship between burden and coping.[23,34] Others have reported no consistent correlations between burden and the problem focused strategies.[32]

Caregiving experience

One study from India reported that greater use of problem focused and seeking support coping strategies were associated with higher positive personal caregiving experience. However, negative caregiving experiences were not related to coping in the same study.[23]

Expressed emotions

Scazufca and Kuipers reported use of avoidance coping to be strongly associated with high expressed emotion.[21] In another study, “assertive coping scale” showed a trend toward a negative correlation with the number of critical comments made by parents.[43]

Social support

Poor social support has been reported to be related to more frequent use of emotion-focused strategies, whereas uses of problem focused coping strategies was associated with higher levels of practical and emotional social support and of professional help.[44] Other coping strategies, which have been associated with lower level of social support, include resignation, use of spiritual help as a coping.[45] A study from India reported positive correlation of poor social support with the use of collusion.[25]

Psychological morbidity among caregivers

Studies which have evaluated psychological morbidity in caregivers suggest that coercion, avoidance and resignation coping strategies were significantly associated with the occurrence of anxiety and depressive symptoms in the caregivers.[18] Other coping strategies which have been associated with distress in caregivers include avoidance,[21] self-blame;[46] whereas coping through seeking emotional support, the use of religion/spirituality, active coping, acceptance, and positive reframing are reported to be associated with less distress in the caregivers.[46]

Caregiver's personality

In terms of caregiver's personality, studies from India suggest that neuroticism has a significant influence on coping patterns. Higher neuroticism among caregivers was significantly associated with coercive coping.[26]

Quality of life (QOL) of caregivers

One study from North India evaluated the relationship of coping with QOL assessed by using WHOQOL-BREF and the spirituality, religiousness and personal beliefs (SRPB) facets, of WHOQOL (WHOQOL-SRPB). In this study seeking social support as a coping strategy correlated negatively with all domains of WHOQOL-BREF, whereas avoidance and use of problem-focused coping had no correlation with any of the WHOQOL-BREF domains. Collusion correlated negatively with the domains of physical health, social relationships and the environment and total WHOQOL-BREF score. Similarly, coercion as a coping strategy correlated negatively with the domains of general health and the environment.[27]

Knowledge about illness

A study from India reported that unawareness of illness among caregivers was associated with lower use of coping strategies like increasing social involvement of the patient, positive communication and talking with friends. However, unawareness of illness was associated with more frequent use of resignation.[25]

Psychopathology in patients

One of the earliest studies reported significant correlations between the scores on coercion items on coping scale and “disorganized syndrome” and “psychomotor poverty syndrome” on Present State Examination-9 in patients.[18] Mueser et al.[20] reported relationship of coping responses with various negative symptoms of patients.[20] Studies based on family coping questionnaire from India suggest a positive correlation between resignation as a coping strategy and negative symptoms in patients.[30]

Clinical variables

In terms of other clinical variables, one study found an association between long duration of illness and relative's coping strategies characterized by positive communication and patient's social involvement.[18] Emotion-focused strategies have been reported to be used more frequently by relatives who were living with the patient for longer duration.[44] Studies from India suggest that level of dysfunction of the patient has significant influence on coping patterns of caregivers, with coercive coping associated with higher dysfunction.[26] Studies also suggest that believing that the patient was more in control was associated with more frequent use of collusion, positive communication and increasing social involvement of the patient.[25] Whereas other studies suggest that use of problem-solving coping by caregivers has significant positive correlation with a higher level of functioning in patients.[31]

Sociodemographic variables

In terms of sociodemographic variables, the five countries study from Europe reported that problem-focused coping strategies were more frequently used by young relatives of schizophrenia and were more frequently used by relatives of patients of younger age.[44] Studies from India suggest that caregiver's gender has a significant influence on coping patterns. Female caregivers were found to be using problem-focused and seeking-support strategies more often, and avoidance less often.[26] Married caregivers more often seek spiritual help.[25] Other studies have reported no association between different coping strategies and sociodemographic variables.[32]

Illness perception

Rexhaj et al.[47] evaluated the relationship between coping and illness perception and reported positive correlation between problem-focused and emotion-focused coping with illness perception in the form of “illness brings about negative consequences for the caregivers.” However, social-support coping had a negative correlation with the illness perception of “illness brings about negative consequences for the caregivers.” Problem-focused coping further had a positive correlation with illness perception of presence of a feeling of control by the caregiver and treatment helps to control the symptoms. Emotion-focused coping had a positive correlation with illness perception that illness brings negative consequences for the patients, self-blame, coherence and emotional representation. Social support focused coping had a positive correlation with emotional representation.[47]

STUDIES EVALUATING THE RELIGIOUS COPING OF CAREGIVERS OF SCHIZOPHRENIA

Across the globe, few studies have evaluated the religious coping of caregivers of patients with schizophrenia. A study which included 83 caregivers of patients with severe mental illness, 40 of those suffering from schizophrenia, showed that increased religiosity was associated with less depression, better self-esteem and better self-care in the caregivers. The study also revealed that personal religiosity (i.e., believing that God was a source of strength and comfort, receiving spiritual support in coping with the mental illness of a family member) was a stronger predictor than religious service attendance of family member adjustment (i.e., depression, self-care, self-esteem). One's personalized expression of faith in coping with adversity was a better predictor of adjustment than one's global religious practices and values.[48]

Studies have also shown that family members’ religiosity may also interact negatively with their experiences of coping in general with mental illness. In particular, research shows that relatives may at times use their religious beliefs or practices in maladaptive ways, such as by believing that their loved one's illness is a punishment by God.[49] Collaborative forms of religious coping (i.e. viewing oneself and God as sharing responsibility and working together in dealing with adversity) are often associated with better psychological adjustment to stress.[48] In contrast, adopting self-directing (i.e., assuming full responsibility for problem-solving without assistance from God) or deferring (i.e., placing complete responsibility for problem-solving on God) styles of religious coping may be associated with negative consequences such as feelings of less competence. Thus, patients and family members who either passively turn to God with their problems and wait for solutions to emerge and those who attempt to tackle their problems on their own without any help from God are at risk of impairing their adjustment to mental illness in a loved one.[49] Furthermore, a study on 72 caregivers of patients with schizophrenia and schizoaffective disorder revealed that maladaptive religious coping predicted high expressed emotion in comparison to nonreligious coping.[50] Another study which used open ended questions to evaluate the attributions, emotions and help giving reported that turning to religion as a source of hope and comfort was useful in coming in terms with patient's illness.[51] In a recent review of the literature, which covered 43 studies, the authors reported that religion provided a supportive role in nearly every case. Religion helped in dealing with illness, coping with stress, comfort, personal relief, resignation/acceptance and hope. The religious coping methods included religious or spiritual beliefs, religious or spiritual practices and religious or spiritual community participation.[52]

Only one study from India has evaluated religious coping and its role in the process of caregiving. A study done on 60 patients of schizophrenia and their caregivers, examining the use of religious coping and its relation to psychological well-being of caregivers of patients with schizophrenia, utilized a semi-structured interview schedule comprising of 13 questions to assess religious beliefs and practices and studied its association with the personal characteristics of the patients and the caregivers, level of functioning in the patients (assessed by the global assessment scale), caregiver burden, coping strategies used by the caregivers by using coping check list and their psychological well-being. Personal characteristics of the patients and caregivers like age and education were not found to be associated with strength of religious belief and religious coping in caregivers, but were significantly correlated with burden with older age and lesser education in both patients and caregivers leading to more burden. Level of religious coping in caregivers was found to have a negative correlation with patients’ overall functioning as assessed by the global assessment scale. Use of denial as a coping strategy was associated with a greater burden and lesser well-being and problem-solving strategies associated with a lesser burden and greater well-being. Strength of religious belief was also found to be a more important predictor of well-being than religious coping. The study thus concluded that strength of religious belief plays an important role in helping caregivers cope with stress of caring for a mentally ill relative and that the role of religious coping should be considered in family intervention programs directed towards relieving the stress of caregivers.[53]

CRITICAL APPRAISAL OF THE RESEARCH IN THE AREA

Many studies across the globe have evaluated the coping strategies of caregivers of patients with schizophrenia. Most of these studies have assessed coping strategies by using family coping questionnaire.[18,19,35,40,41,42,45,47] Other studies have relied on instruments like carers coping style questionnaire,[36] coping checklist,[21] strategic approach to coping scale,[43] brief cope,[46] Stressverarbeitungsbogen, a German coping questionnaire,[37] coping strategies checklist,[38] ways of coping questionnaire.[22] Some other studies have used qualitative methods to study the coping of caregivers of patients with schizophrenia.[54] Most of these studies have been cross-sectional in nature,[20,36,43,46] with occasional studies following the same cohort at different time frames.[21,35,37,39] Further, most of the studies are limited to a single center[20,36,43,46,55] with occasional studies carried out in multiple centers in different countries.[35,40,44,45] The sample size of these studies has varied from 20 to 236, with only occasional studies including >100 caregivers.[35,37,40,44,45] Studies from India have also followed the global trends and have assessed coping by using different instruments and have evaluated the relationship of coping with other caregiving variables. Most of these studies have come from Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh[23,24,25,26,27,28] and have been based on the Hindi adaptation of coping checklist by Scazufca and Kuipers.[23,24,25,26,27] Further, most of the studies have tried to evaluate the stress-coping model of caregiving.[23,24,25,26,27,28,29,30,31,32] Research on assessment of religious coping among the caregivers of schizophrenia is limited, and there is a need to expand this literature.

WHAT DO THESE FINDINGS SUGGEST?

Findings suggest that it is important to understand the coping strategies of the caregivers of schizophrenia as difference coping mechanisms are associated with various caregiving related outcomes like burden, caregiving experience, expressed emotion, illness perception, QOL and psychological morbidity among the caregivers. Evidence also suggests that the coping mechanisms of caregivers can influence the patient related outcomes. Research suggests that caregivers use a broad range of coping mechanisms to deal with the stress of caregiving. In general use of problem-focused or adaptive coping mechanisms, are associated with better caregiving outcomes. Relationship of emotion-focused coping and caregiving outcome, not as clear cut as that seen with problem-focused coping.

Accordingly, clinicians dealing with the caregivers of patients with schizophrenia must systematically assess the coping mechanisms of caregivers and encourage the use of adaptive and problem-focused coping mechanism to improve the caregiving and patient related outcome.

In terms of research, it is important to evaluate the relationship of coping with many other caregiving variables like stigma, familism and family cohesion. In general, there is a dearth of research on religion and coping with mental illness among the caregivers.