COPING AND PSYCHOLOGICAL DISTRESS IN ...

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Rukhsana Kausar* and Graham E. Powell. ABSTRACT. Care-giving is an ..... Holroyd K, Lazarus R. Stress, Coping and Somatic adaptation. New York: The.
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 carer s, 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 avoidantevasive 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