ORIGINAL ARTICLES COPING WITH CARING : COGNITIVE APPRAISAL OF POST-ONSET PERSONALITY AND PHYSICAL CHANGES IN PATIENTS WITH NEUROLOGICAL DISORDERS Rukhsana Kausar* and Graham E. Powell ABSTRACT People who are care-givers of severely ill persons experience significant strain when the ill persons develop personality changes, rather than physical changes from a disease. Cognitive factors may play a mediating role in this differential experience of stress. This research examines carers' cognitive appraisal of post-onset personality changes and physical changes in people with neurological disorders. For the purpose of the study, carers of 112 patients completed self-reporting measures. All assessments were carried out 4 to 18 months after onset of the illness. It was hypothesised that carers would perceive personality and physical changes in a differential manner. The results indicated that compared to physical changes, personality changes were perceived as more stressful, more threatening, of greater centrality and elicited more concerns. Physical changes were perceived as more manageable compared to personality changes. Carers expressed significantly greater need for information and greater need to hold back from acting impulsively in relation to personality changes. The findings suggest that carers have a differential perception of post-onset changes in patients, and that professionals must be aware of this while designing interventions for the patients as well as the carers. INTRODUCTION It is recognised by service providers and in government policies that relatives play a major role as care-givers of their ill and dependent family members in the community (1). Since these informal caregivers constitute the backbone of community care and are the principal source of support for their dependent relatives, therefore it is important to consider the emotional costs which the care-giving job may demand (2). Numerous factors contributing to the carers' psychological distress are already cited in the literature. Carers may have to cope with problems of mobility, sensory loss, cognitive impairment, memory deficits, and behavioural and personality changes in patients. More recent research has shown that behavioural disturbances in patients contribute to a higher level of physical and psychological morbidity in caregivers (3,4,5) Cognitive processes can influence the outcome of stress, and cognitive appraisal and coping are central to the theoretical perspective of the stress and coping model developed by Lazarus and colleagues (6,7). Cognitive appraisal according to the model of Lazarus et al, is defined as a process in which a person evaluates a particular encounter with the environment, estimates whether the situation is relevant or important to him (known as primary appraisal) and if so, whether it requires the mobilisation of coping strategies, and whether the necessary strategies are within the means of coping resources (referred to as secondary appraisal). Primary appraisal refers to an evaluation of the situation with regard to its significance for the individual's well being. In this process the individual senses that something of importance is at stake in an encounter, for example, the individual's own well being, self-esteem, a loved one's health or well-being (7,8). If the event is relevant from the person's standpoint, the encounter is appraised as stressful. Primary appraisals of a stressful event include harm/loss, threat, and challenge (7,9,10). Harm/loss appraisal refers to any kind of harm, loss or damage that has already been sustained, such as injury, loss of self-esteem or loss of friendship. Threat appraisal refers to anticipated harm, loss, or damage. In challenge appraisal, the judgement involves assessing whether a transaction holds the potential for harm, for mastery, or for gain. The individual also judges if he can influence the outcome himself. Thus, in challenge appraisal, the appraisal of stakes and a sense of positive control are fused together. An encounter is seen as taxing, but not beyond one's resources (9). Secondary appraisal refers to the evaluative judgement about whether any action can be taken to improve the person's relationship with the environment, and if so, which coping resources are available, and which coping options might work. The person evaluates if anything can be done to overcome or prevent harm, or to improve his prospects for benefits (6,7). It include judgements and decisions concerning a wide variety of coping options. Various coping options are evaluated, such as changing the situation, accepting it, seeking more information or holding back from acting impulsively (10). Cognitive appraisal is determined by a number of individual as well as situational factors (6,7). Situational characteristics of an encounter can make it potentially harmful, dangerous, threatening or challenging. The characteristics most relevant to care-giving in general, and to care-giving of patients with sudden onset of neurological problems, are "event uncertainty", "ambiguity", and "novelty". A sudden onset of a neurological disorder is unexpected for the patient as well as for the relatives. The occurrence of personality and behaviour changes in patients may be even more unexpected and subject to uncertainty. Ambiguity can intensify threat by limiting an individual's sense of control and/or increasing his sense of helplessness (11,12). Since carers usually do not know about the relationship between personality and behaviour changes, such changes in patients will seem ambiguous to them. In case of physical morbidity, medical advances raise the hope of the patient's potential to regain normal functioning, and hence the loss of function is understood better. In other words, relatives may understand why a limb is paralysed, but not why someone is emotionally more volatile. This lack of understanding about the relationship between personality and behaviour changes enhances the stress in caregivers. It was hypothesised that caregivers would perceive personality changes in patients as more threatening, of more centrality, and less "challenging" in comparison to physical changes. It was also expected that caregivers would express higher levels of concern regarding personality changes as opposed to physical changes. It was hypothesised that in secondary appraisal, personality changes would be perceived as less manageable and less controllable when compared to physical changes, and that carers would express a greater need to accept them, to get information about them, and to restrain themselves from acting impulsively in relation to them METHODOLOGY Participants The list of patients who had sudden onset of neurological problems between 4 to 18 months previously was obtained from medical records of the King's College hospital, London and from two rehabilitation units from Surrey county in England. A total of 352 patients were approached as possible participants in the study. The main carer was defined, as a person who assumed the main responsibility of any care needed by the patient. The patients were either living with the carer in the same household or living elsewhere, being looked after by the carer. Table 1 gives the characteristics of the patients and caregivers. The number of male (56) and female (56) patients was equal. Most of them were married (73%) and their ages ranged from 16 to 75 years (8=53.7, S.D 17.02). The majority of the patients had a stroke (71%), and others had head injury (16%), or other neurological diseases, such as Guillian-Barre syndrome, encephalitis and meningitis (13%). Carers were mainly females (68%), ranging in age from 25 to 79 years (8=52.22, S.D =14.43), and were married (83%). Sixty-eight carers (62%) were spouses, and 13% were parents. Most of the carers reported themselves as healthy (N=95, 84%) and only a few reported (N=16, 15%) health problems such as tension and anxiety (N=4), diabetes (N=4), and heart related diseases (N=7). Almost half of the carers were either working full time (N=34, 30%) or part-time (N=16,14%) at the time of the assessment. Questionnaires were mailed to 352 patients and 193 patients passed on the questionnaires to their carers. Of those, 155 carers responded, of whom 27 did not want to participate, and 16 questionnaires did not qualify for analysis. The response rate was 80% (155 out of 193). Table 1: Demographic and other characteristics of patients and carers
Assessment Measures The carer's primary and secondary appraisals of post-onset changes in patients was measured using the Stress Appraisal Measure (SAM) (13), the Primary Appraisal Questionnaire (PAQ), and secondary appraisal scales. The appraisal of threat, challenge and centrality were assessed using the respective sub-scales on SAM. The carers' level of concerns (or stakes involved) was measured using the Primary Appraisal Questionnaire (PAQ). "SAM" includes seven sub-scales which assess both primary and secondary appraisal, as well as the overall stress. The scales are termed as `stress', `threat', `challenge', `centrality', `control by self', `control by others', and `uncontrollability' scales. The 'threat', 'challenge and 'centrality' scales measure primary appraisal and the other three scales (the controllability scales) assess secondary appraisal. The overall stress of an encounter is assessed with the stress scale. The threat appraisal scale measures the extent to which a person feels threatened due to the expected negative outcome of a situation. Challenge appraisal is about the person's feelings of excitement to tackle a problem and his expectation of positive outcome. Centrality refers to the perceived personal significance of an event for an individual's well-being. Although "SAM" has been reported to have good psychometric properties, the present study examined reliability of the scales by using internal consistency estimates. It was found that the scales were fairly reliable, for both personality changes and physical changes, with the Cronbach alpha coefficient values ranging from 0.71 to 0.89 for personality changes and 0.63 to 0.90 for physical changes. The Primary Appraisal Questionnaire (PAQ) was designed by the researchers for the present study. It has questions that measures a carer's concern about psychological, social, physical, financial and marital factors. A pool of 47 items was identified from literature (10,14,15) and a pilot study was conducted with close relatives of the patients. Carers were asked during this study to indicate on a four point Likert scale, the degree of their concerns or worries. They completed separate appraisal questionnaires with regard to physical changes and personality changes. Subsequent analysis of these answers identified six factors, namely, the carers' concern about their own health and well being, the patient's self-esteem, their own self-esteem, their social relationships, their relationship with the patient and financial matters. Secondary appraisal in terms of controllability was measured using three sub-scales on the `SAM' (control by self, control by others and uncontrollability). In addition, secondary appraisal in terms of coping options was assessed using four single item scales (16). Carers indicated on a five point Likert scale, the extent to which they perceived patients' post-onset changes as ones they could change or do something about, ones they had to accept, ones they needed to know more about before they could act, and ones where they had to hold back from acting impulsively. Procedure The patients who were mailed the questionnaires were requested to identify their carers as 'someone who would be responsible for providing personal care and services' and to pass on questionnaires to them. Carers completed the assessment measures twice, once in relation to personality changes, and once in relation to physical changes in patients. To overcome the order effect, half of the carers filled in the questionnaires first for the personality changes and then for physical changes, whereas the others completed the measures first for physical changes and then for personality changes. The data were analysed using Principle Component Analysis, and a series of paired t-tests to compare carer's cognitive appraisal of personality and physical changes in patients. RESULTS 1. Principle Component Analysis of the PAQ An exploratory component analysis was carried out on the PAQ, as shown in Table 2. Items which were not applicable to more than 30 percent of the carers were excluded from the questionnaire, and for the rest of the items (N = 30), the non-applicable responses were treated as missing data. A principle components analysis with varimax rotation of factors resulted in identification of six factors with Eigen value greater than 1. The solution resulted in maximally independent factors each comprising a set of conceptually meaningful items. Separate analyses were carried out for both personality and physical changes. Both component analyses resulted in identifying similar factors. Results from the analysis with regard to personality changes are reported in this paper. Internal consistency estimates produced high alpha coefficients for the six factors (ranging from 0.79 to 0.86). The first factor was "carer's concern about their own well-being" (5 items, a=0.86), which describes the carer's concerns about their own physical health and well-being. The second factor was the "carer's concern about patient's self-esteem" (6 items, a = 0.84) referring to the carer's worry about the patient's psychological well-being. The third factor was the "carer's concern about their own self-esteem" (5 items, a=0.83). Factors four and five were named "Carer's concern about their social relationships", and the "carer-patient relationship" (6 items, a=0.86, and 5 items, a=0.79 for both factors, respectively). These scales reflect the carer's concern about their social relationships in general, and with the patient in particular.
Table 2: Factor Structure of the Primary Appraisal Questionnaire
2. Cognitive Appraisal of post onset Personality and Physical changes Paired t-test analyses were carried out to compare carers' cognitive appraisal of personality changes with that of physical changes. The results presented in Table 3 show that carers perceived personality changes as more stressful (t=5.91, df=77, p<0.001) and more threatening (t= 5.58, df=77, p<0.001) than physical changes. No significant difference was found between the challenge appraisal of personality and physical changes. Carers scored significantly higher with regard to personality changes on the "centrality" scale than physical changes (t = 5.72, df=77, p<0.001). More concerns and worries were expressed regarding personality changes in patients than the physical changes (t=9.48, df=111, p<0.001). In particular, carers were more concerned about their own well-being and self-esteem in relation to personality changes than physical changes, whereas, patients' self-esteem was perceived to be more at risk in relation to physical changes. Furthermore, carers showed more financial worries regarding personality changes. Table 3: Carers' primary appraisal of personality changes in patients in comparison with physical changes *
Regarding secondary appraisal, carers did not perceive personality and physical changes in patients as different on the dimension of controllability. However, physical changes were perceived as more manageable when compared to personality changes (t = -6.28, df =111, p<0.001). Carers perceived personality changes as requiring more acceptance than physical changes (t= 5.13, df=111, p<0.001). They wanted more information and felt the need to hold back from acting impulsively while handling personality changes, when compared to physical changes, as shown in Table 4. Table 4: Carers' secondary appraisal of patients' personality changes in comparison with physical changes*
DISCUSSION This study examines carers' cognitive appraisal of post-onset changes in patients with sudden onset of neurological disorders. To examine primary appraisal in terms of carers' concerns and worries, a questionnaire was constructed and factor analysed. Findings revealed that personality changes in patients were perceived as more stressful, and more threatening compared to physical changes. Carers perceived personality changes as of greater centrality and expressed more concerns with respect to personality changes than physical changes. In particular, the carer's well-being and self-esteem was appraised as more at risk in relation to personality changes than physical changes. More financial worries were expressed in relation to personality changes. The patient's self-esteem was perceived as more at risk in relation to physical changes. There is no information available in the literature on the carer's primary appraisal of post-traumatic changes in patients. However, from available research on relationship between patients' behavioural disturbance and psychological morbidity in relatives (5,17,18,19,20.21), it could be inferred that more distress in carers in relation to personality changes could be due to the differential pattern of cognitive appraisal of post-onset changes in patients. The carers' greater concern about their own self-esteem and well-being with regard to personality changes in patients can be compared to findings from head injury research (in which head injury is characterised by the occurrence of marked personality and behaviour problems in survivors) which reports that head injury poses a considerable threat to relatives (22). Personality and behaviour changes, though not visible, can be very embarrassing for relatives (21,22,23), and may affect their self-esteem. Because of the negative nature of personality changes in the patients, the spouses frequently observe that the patient is no longer the 'person I married' (24). The strain of personality and behaviour changes may lead to deterioration in the carers' physical and psychological well-being (25). It has also been argued that it becomes difficult for relatives to work through their feelings of loss over their loved ones' personality changes because society does not recognise these feelings (26). Others' ignorance of the relative's feelings may make them feel more distressed, thereby affecting their self-esteem. The patients' self esteem was perceived as more at risk in relation to physical changes. The carers' concern about the patients' self-esteem regarding physical changes could be because of others' attitudes towards a visible disability such as paralysis. Studies have found a negative social attitude towards disability and towards interactions with a disabled individual (27). Due to the visibility of physical changes, social stereotypes and attitude, carers could be worried about their disabled relatives being stigmatised and discriminated against (28,29). Moreover, disabled people may go through an alteration in the sense of their body image (30,31), and may experience low self-esteem (32,33). Besides, carers could be worried that the resultant physical dependency on others to carry out sample activities such as eating, dressing, bathing, and transfer (as a consequence of physical changes) might affect the patient's self-esteem. Personality changes were perceived as less manageable than physical changes, and carers expressed a greater need to accept, to get information, and to restrain themselves in relation to personality changes than physical changes. The mechanisms involved are probably not straightforward. As stated earlier, physical changes after a neurological disorder are more or less expected, and relatives may be more familiar with such changes, whereas personality and behaviour changes are unexpected, and hence the carers feel that they need to know more about it. Personality and behaviour problems in patients, such as sudden mood changes, irritability, emotional coldness, social avoidance, meanness, unreasonableness and immaturity, may also lead to anger and distress in carers (5), and make them realise that they need to restrain themselves and not lose their temper. Caring for a patient with physical changes might require lifting and manoeuvring, which although physically exhausting, are still perceived as easier to handle, compared with personality changes. Outbursts of temper, agitation and embarrassing behaviour are difficult to handle under any circumstances. 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