COPING AND PSYCHOLOGICAL DISTRESS IN CARERS OF PATIENTS WITH NEUROLOGICAL DISORDERS Rukhsana Kausar* and Graham E. Powell ABSTRACT Care-giving is an exhausting task, and carers are reported to experience a very significant amount of strain. This research examined the coping levels and psychological distress experienced by carers, in relation to the post-onset personality and physical changes in patients with neurological disorders. The participants of the study were 112 carers (either a close relative or a friend) of patients. It was hypothesised that the distress levels experienced by the carers would be in relation to the degree of personality changes, and that psychological distress in carers would be predicted by the strategies they employ to cope with post-onset changes in the patient. Assessment of the carers was carried out 4-18 months after the onset of neurological disorders in the patients. Coping was assessed using the "Ways of Coping Questionnaire". Psychological distress in carers was measured in terms of the subjective burden, anxiety and depression they experience. The Leeds' scales for anxiety and depression, and a 10 point rating scale were used to measure subjective burden in carers. Data were analysed using t-test analysis, correlation and regression analyses. It was found that carers experienced an enormous amount of psychological distress. Those carers who were more dependent on emotion-focused coping styles reported greater distress as compared to those who depended more on problem-focused strategies. These findings have important implications from the point of view of rehabilitation as well as that of community care. INTRODUCTION Neurological disorders such as stroke and head injury may be accompanied by a number of neuropsychological deficits (1,2). Among neuropsychological problems, emotional and personality alterations are most common and tend to persist (1,3,4). A large number of studies have concluded that caregivers experience burden, distress, and negative effects on their physical and emotional well being (5,6). Although numerous factors contributing to the carer's burden and distress have been identified (7,8), it is broadly agreed that personality and behavioural changes in patients are more burdensome for relatives than physical changes (1,4,9,10). Though there are many studies identifying factors associated with the carers' burden and psychological distress, the relationship of coping and psychological distress in caregivers, is less often investigated. It has been suggested that coping plays an important role in a person's adjustment to stress (11,12). Much of the earlier research has focused on examining the mediating role of coping in stress. However, relatively less attention is paid to coping in the particular context of care-giving. There is biological and psychological evidence to associate coping with psychological adjustment (12,13). Problem-focused styles of coping are generally related to positive affect, whereas a high level of emotion-focused coping is associated with poor adaptation (13,14). Pratt and associates (15) found passive coping styles associated with a high level of burden, and problem-solving coping styles related to lower levels of burden, in carers. Similarly, Lund, Pett and Caserta (16) found that avoidant-evasive coping strategies were related to high levels of burden and lower levels of life satisfaction. However, problem-focused coping styles were related to high life satisfaction. Reports show that predominantly problem-focused coping styles, with less of emotion-focused coping styles, lead to a decrease of psychological distress (17). Based on the existing literature, it was hypothesised that carers who use more emotion-focused coping styles rather than problem-focused coping styles would feel more psychologically distressed, and that those who use less emotion-focused coping styles and more problem-focused coping styles would feel less distresses. METHOD Participants One hundred and twelve carers of patients with neurological disorders were participants in the study. The patients were mailed the questionnaires and requested to pass them on to their carers. Assessment Measures and Procedure The "Ways of Coping Questionnaire" (WOC) (30) was used to assess the carers' coping with post-onset personality and physical changes in patients. The WOC questionnaire consists of sixty-six items. The factor analysis revealed that the questionnaire comprises of eight coping strategies: confrontative coping, planful problem-solving, distancing, seeking social support, self-control, escape-avoidance, and positive-reappraisal. On a four-point scale, the subject has to indicate the extent to which he uses a particular strategy. In the present study, the carers completed the WOC questionnaire twice; once in relation to personality changes and once in relation to physical changes in the patient. The Leeds' Scale of Anxiety and Depression (19) was used to measure anxiety and depression in carers. The scale consists of 15 items, which cover a range of the common symptoms of depression and anxiety. Subjective burden was measured by asking the carers to rate the strain they felt on a 10-point scale. After obtaining the consent of the patients, they were mailed a set of questionnaires and requested to pass them on to their carers. There were two sets of questionnaires that they had to complete; one in relation to personality changes and the other in relation to physical changes in the patient. In order to overcome the order effect, half of the carers filled in the questionnaires first for the personality changes and then for the physical changes in the patient, whereas the others completed the measures first for the physical changes and then for personality changes. Carers also rated their subjective burden in relation to both types of post-onset changes in patients. The Leeds' scales for anxiety and depression were completed only once. RESULTS Tables 1 and 2 show the correlation between coping strategies with personality changes and physical changes respectively, and subjective burden, anxiety and depression in carers. Based on the median score (5.75), subjective burden in carers (average of the two burden scores i.e. one in relation to physical changes (8 = 4.90, SD=2.68) and one in relation to personality changes (8 = 6.50, SD=2.59) was dichotomised into low, medium and high levels. Carers who scored below the median value were considered as experiencing low-medium levels of burden (N=59, 53%) and those scoring above the median were regarded as the high burden group (N=53, 47%). To demarcate the absence and presence of psychological distress in carers, a cut off score of 7 as recommended by Snaith et al (19) was chosen both for depression and anxiety scales. It was revealed 48% carers were experiencing high levels of depression and 38% were experiencing anxiety. The mean score on the depression scale was 9.47 (SD=2.14) and on anxiety scale it was 7.85 (SD=3.95). The carers' score on the subjective burden scale in relation to personality changes was also compared with their score in relation to physical changes using a paired t-test. Analysis indicated a significant difference between the carers' burden for the two types of changes (t=8.35, df =111, p<0.001) with the mean score for the personality changes being 4.95 (SD =2.67). The relationship between the carers' coping and distress was explored using correlation analyses. Results indicated that apart from confrontative coping and reappraisal, all coping strategies showed positive relationships with the carers' subjective burden, anxiety and depression. A similar pattern of relationships emerged in the analyses regarding both types of changes. While coping with physical changes, carers experienced more depression and anxiety in relation to "distancing" and "escape-avoidance". Regarding personality changes, anxiety and depression in carers was associated with the "acceptance of responsibility". The use of the "problem-solving" strategy had a negative relationship with subjective burden and depression in carers, however, it indicated a positive relationship with carers' anxiety. Moreover, those carers who employed more coping strategies reported more subjective burden and anxiety.
Table 1: Correlation of coping strategies with personality changes and subjective burden, anxiety, and depression in carers
Table 2: Correlation of coping strategies with physical changes and subjective burden, anxiety, and depression in carers
Following the correlation analysis, regression analysis was carried out to examine coping strategies as predictors of subjective burden, anxiety and depression in carers. Eight coping strategies were regressed against subjective burden, anxiety and depression in carers, in three separate regression equations each, for personality changes and physical changes. Results revealed that the use of "distancing" predicted the carers' subjective burden as well as anxiety with regard to both types of changes. However, it accounted for a very small amount of variance. None of the coping strategies predicted depression in carers, as seen in Tables 3 and 4. Table 3 : Coping strategies as predictors of subjective burden and distress in carers with regard to personality changes (only significant results reported)
Table 4 : Coping strategies as predictors of subjective burden and distress in carers with regard to physical changes (only significant results reported)
DISCUSSION The present study examined the relationship between carers' coping styles with post-onset personality and physical changes in patients, and psychological distress that carers feel. The data demonstrated that carers experienced enormous amounts of strain, anxiety and depression. These findings reinforce earlier studies, which have suggested that care-giving is a stressful job, which puts an immense amount of strain on carers (1,4,20,21). Thus, as far as psychological morbidity in carers is concerned, the findings of the present study are consistent with previous research. Although there is a consensus among researchers regarding the burden and distress among carers, varying degrees of psychological distress have been reported by previous studies. Psychological distress reported by carers in the present study is relatively higher than that which has been reported by some of the previous studies (22,23). The difference in the degrees of reported psychological distress could be due to the sampling from different populations, the wide range of assessment measures used and the operationalisation of the concepts. However, the elevated levels of distress among carers found in the present study require some explanation. One of the possible explanations for the findings of the present study could be the very nature of the sample. The majority of the care-recipients in the present study were stroke patients who might have experienced a number of physical and psychological problems, that might have enhanced the carers' distress. Secondly, it has been argued in the literature that sharing the same household as the patient may increase the burden on caregivers (24). Given that the majority of carers in the current study were close relatives (97% were either spouses, parents, children, siblings or other relations), it is more likely that they were living in the same house as the care recipient, thereby feeling more distressed. Another factor that has been frequently pointed out as a correlate of psychological distress, is economic and vocational disruption (25,26). The sudden onset of disability affects the financial circumstances of the victim as well as the carer. Patients and their carers may have to give up their jobs and interests. Distress in carers can further be explained by the fact that they face a situation characterised by social isolation, reduced control over their lives, and loss of a previously close friendship, which are features that are generally associated with depression (27). Emotion-focused styles of coping such as distancing, escape-avoidance and acceptance of responsibility were related to high levels of psychological distress in carers, confirming some earlier findings (28, 29). Quayhagen and Quayhagen (30) reported that fantasising (intrapsychic) was inversely associated with well being among caregivers of Alzheimer's patients. The use of emotion-focused coping strategies serves to avoid actually confronting the problem, and has been reported to show a positive association with depression and negative association with satisfactory outcome (17,31,32). However, the results from the present study are contrary to those reported by Pearlin and Schooler (33), who found that strategies involving perceptual distortions of reality (e.g. intrapsychic) are adaptive, especially when the stressful situation was unavoidable. It could be possible that these discrepancies are related to the nature of the stressor being experienced. In caring for a person with physical and personality changes, the use of intrapsychic or wishfulness strategies that mentally remove the caregivers from the demands of the impaired person are contrary to the needs of the situation. Carers of such patients must always be aware of the patients' activities. Failure to do so may result in injury to the impaired person. The use of problem-focused coping strategies, such as "problem-solving" showed a mixed effect on outcome. It was negatively associated with burden and depression, and was positively related to anxiety in carers. The findings suggest that carers, who focused on the problem and tried to alter the situation by doing something about it, experienced less burden and depression. However, their active involvement in finding practical solutions might have raised their anxiety. Therefore, successfully coping with a situation seems to require the ability to do something practical about it rather than avoiding it. These findings are in line with previous research on parents of disabled children (34). Regression analyses revealed that, with the exception of "distancing" (emotion-focused coping), none of the coping strategies predicted anxiety and burden in carers. Distancing is a form of emotion-focused coping style that disengages the person from reality and thereby, it may increase psychological dysfunction. In the literature, this and other emotion-focused coping strategies such as wishful thinking have frequently been reported to be related to maladaptive outcomes (35). In Johnson and Kenkel's study (36) of female incest victims, the adolescents who showed the greatest amount of global psychopathology were the ones who coped by means of detachment/distancing. Likewise, research on care-giving has documented the negative effect of emotion-focused coping styles (15,30,37). Several implications can be drawn from the findings of the present research. First, health and social service agencies, and policy makers must recognise the potential psychological impact of care-giving on carers of patients with neurological disorders. One should not assume that distress in carers is related generally to the objective stressors of care-giving. Instead, specific aspects of disability, i.e. post-onset personality, behavioural and physical changes in the patient, which differentially contribute to the carers' distress, are of crucial importance. Further, the results may be clinically relevant. More attention should be paid to the coping process, emphasising particularly the use of practical problem-solving strategies rather than avoidance strategies, whilst dealing with post-onset sequelae of the patient. This may be especially important in order to reduce the carers' distress. The finding suggests that carers may benefit from efforts to mobilise their skills in coping strategies such as problem solving. Health professionals agree that the quality of care and the health of the care-recipient are of vital importance. However, the levels of distress experienced by carers suggest that the health of carers be considered as of equal importance, since the health of the care -recipient is dependent on that of the carers. If more attention is directed towards carers, it will help them approve of their attention to themselves and ease the guilt they may experience when they use time for themselves. *Department of Applied Psychology, University of the Punjab, Quaid-i-Azam Campus, ACKNOWLEDGEMENTS: The authors wish to thank the Government of Pakistan for funding this project, and Professor C.G. 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