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Abstract Willebrand, M. 2003. Coping, Personality and Cognitive Processes in Burn Injured Patients. Acta Universitatis Upsaliensis. Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1223. 55 pp. Uppsala. ISBN 91-554-5528-X.
Being severely burned is a traumatic life event that affects the victim both physically and psychologically. Recovery can be a long process that is dependent in part upon psychological factors, but research in this area is still quite limited. The main aim of the thesis was to explore coping, personality and cognitive processes in long-term and short-term adaptation. The participants were recruited from three separate samples of former and consecutive adult burn patients. A questionnaire, the Coping with Burns Questionnaire (CBQ), was developed to retrospectively assess coping. It consisted of six coping factors related in different ways to self-reported health status. Regarding personality, the former patients displayed slightly more Neuroticism than people in general, suggesting an overrepresentation of premorbid neurotic personality traits. Avoidant coping was related to poorer perceived health status, more maladaptive personality traits, and was a strong predictor of psychological symptoms at three months post-burn. Regarding cognitive processes, a moderate attentional bias towards burn- related information was found in the former patients when using the emotional Stroop task. This indicates that the burn may still be an important issue years after the event. Finally, former patients’ reactions to participating in a trauma-related postal survey were investigated. A majority felt that participation was positive or even beneficial, while a small subgroup felt that participation was cumbersome or negative. To summarise, although many burn patients adapt well in the long run, the burn may still be a significant theme and the subgroup of Avoidant copers are especially vulnerable. The CBQ seems to be an adequate tool for discerning individuals at risk for poor adjustment. Trauma-related postal questionnaires are well accepted by a majority of former burn patients. Although long-term prospective follow-ups are needed to further validate the results, it is suggested that early screening of psychological factors could be of value in burn care.
Key words: Accident, burn injury, coping, depression, ethics, health status, personality, posttraumatic stress, questionnaire, trauma
Mimmie Willebrand, Department of Neuroscience, Psychiatry, University Hospital, SE-751 85, Uppsala, Sweden
© Mimmie Willebrand, 2003
ISSN: 0282-7476 ISBN 91-554-5528-X
Printed in Sweden by Uppsala University, Tryck & Medier, Uppsala, 2003 PAPERS INCLUDED IN THE THESIS
This thesis is based on the following papers, which are referred to in the text by their Roman numerals:
I Willebrand M, Kildal M, Ekselius L, Gerdin B, Andersson G. (2001). Development of the Coping with Burns Questionnaire. Pers Ind Dif 30: 1059-1072.
II Willebrand M, Kildal M, Andersson G, Ekselius L. (2002). Long- term assessment of personality after burn trauma in adults. J Nerv Ment Dis 190: 53-6.
III Willebrand M, Andersson G, Kildal M, Ekselius L. (2002). Exploration of coping patterns in burned adults: cluster analysis of the Coping with Burns Questionnaire (CBQ). Burns 28: 549-554.
IV Willebrand M, Norlund F, Kildal M, Gerdin B, Ekselius L, Andersson G. (2002). Cognitive distortions in recovered burn patients: the emotional Stroop task and Autobiographical Memory Test. Burns 28: 465-471.
V Willebrand M, Andersson G, Ekselius L. Prediction of psychological health following accidental burn. (Submitted)
VI Willebrand M, Wikehult B, Ekselius L. Acceptance of a trauma- focused survey: do personality and health matter? (Submitted)
Contents
Introduction...... 1 Epidemiology ...... 1 Premorbid psychopathology...... 2 Aetiology and burn care...... 2 The process of adaptation...... 3 The burn...... 3 Perceived health and quality of life ...... 3 Psychological reactions ...... 4 Depression ...... 4 Anxiety...... 4 Coping...... 5 Coping and health...... 6 Coping in burn injured patients ...... 7 Personality...... 8 Personality traits in burn injured patients ...... 8 Cognitive processes and post-trauma adjustment ...... 9 Negative appraisals...... 9 Autobiographical memory...... 9 Attentional processes...... 10 Participant reactions to postal questionnaires ...... 11 Aims of the thesis ...... 13 Specific aims ...... 13 Methodology...... 14 Participants and procedure ...... 14 Assessments and measures...... 17 Coping ...... 17 Burn-specific health...... 17 Personality traits ...... 19 Cognitive tests ...... 19 Cognitive status ...... 20 Life events ...... 20 Psychological health...... 20 The burn accident ...... 21 Socio-demographic and injury-specific data ...... 21
Acceptance of the questionnaires ...... 21 Statistical analyses ...... 21 Ethics...... 22 Results...... 23 Development of the Coping with Burns Questionnaire (paper I) ...... 23 Assessment of personality traits in former burn patients (paper II) ...... 25 Exploration of coping patterns in burn injured adults (paper III) ...... 26 Cognitive distortions in recovered burn patients (paper IV)...... 27 The Autobiographical Memory Test ...... 27 The Stroop task...... 27 Prediction of psychological health following accidental burn (paper V).29 Acceptance of a trauma-focused postal survey (paper VI) ...... 30 Discussion...... 32 A burn-specific coping instrument...... 32 Maladaptive coping strategies ...... 32 Adaptive coping strategies...... 33 Personality traits in burn injured adults...... 34 Coping patterns, personality traits and health ...... 35 Memory and attentional processes ...... 36 Prediction of psychological problems...... 37 The coping instrument...... 39 Personality traits, health and acceptance of a trauma-focused survey .....39 General methodological considerations ...... 40 General discussion ...... 41 Current status of psychological support and aftercare for burn injured patients...... 41 Future directions...... 42 Conclusions...... 44 Acknowledgements...... 45 References...... 47
Abbreviations
AMT Autobiographical Memory Test ANOVA Analysis of Variance ASD Acute Stress Disorder BSHS-A Abbreviated Burn Specific Health Scale BSHS-B Burn Specific Health Scale-Brief CBQ Coping with Burns Questionnaire COWAT Controlled Oral Word Association Test CTI Coping with Trauma Interview HADS Hospital Anxiety and Depression Scale IES-R Impact of Event Scale-Revised KSP Karolinska Scales of Personality LTE-Q List of Threatening Experiences-Questionnaire LOS Length of Stay in the Burn Unit PTSD Posttraumatic Stress Disorder SD Standard Deviation SSP Swedish universities Scales of Personality TBSA Total Body Surface Area-burned TBSA-FT Total Body Surface Area-Full Thickness burns YPB Years Post-burn
Introduction
Burn injuries occur worldwide and their main cause, fire, has been a threat to mankind ever since time began. However it is also the key to many developments. In ancient mythology, fire is therefore often represented by gods with the power to both destroy and create. It is also associated with beliefs about reincarnation, as in the Egyptian myth of Phoenix, a bird that burned itself to ashes and then resurrected itself. Surviving a fire may thus be symbolically equivalent to goodness, strength and the beginning of something new. In reality, however, being visibly burned is more often associated with shame, as the scars intimidate and frighten the uninitiated. A burn is generally an unpredictable and sudden event that constitutes a physical and psychological trauma for some individuals. For the severely burned and their families, a burn can change their lives for years to come. The impact of the burn event and the burn injury on a person’s life depends on a multitude of factors regarding the accident, the injury itself, and the burn care procedures. In addition, the burn patient is an individual with a personal history that can be a resource or a burden, and an anticipated future that may have been shattered. Therefore, premorbid individual characteristics and post-burn psychological mechanisms become important factors in adaptation after a burn injury.
Epidemiology The incidence of burn injuries that require hospital care varies considerably among different countries, social cultures and geographical regions. There is no confident statistics on the world-wide incidence of burn injury, but the World Health Organisation has estimated that each year about 6 million individuals require medical care because of injuries due to fire, and that 300,000 of the injured die (3). The incidence is much higher in developing countries than in developed. In the United States the incidence is about 27–- 30 per 100,000 inhabitants (108), while in Great Britain the corresponding figure is 29 (111), and in southern Italy it is 31 (11). In Sweden the incidence of burn injuries requiring hospital admission is about 17 per 100,000 inhabitants according to the Swedish Board of Health and Welfare (2).
1 Adult burn patients (15 years of age and above) constitute about 60–65 % of the patients (2, 111), and about 60–70 % are men (2, 11, 111, 145). Risk groups for burn injuries comprise children and the elderly (108, 111), the disabled (108), individuals with alcohol- or drug abuse (18), and the socio- economically disadvantaged (111). About one fourth of those who are admitted to a hospital require specialised burn care (108). Survival rates have increased substantially during the last 30 years, as medical advances have made it possible to save the lives of patients with massive burns (137). In the 1970s, a survival rate of 50 % corresponded to a burn covering 30 % of the total body surface area (TBSA), and in the 1990s it corresponded to 70 % of the TBSA (29). In a recent European publication including only adult burn patients, a 50 % survival rate corresponded to a burn covering 90 % of the TBSA (11). Thus, more severely injured individuals survive and are encouraged to resume their place in society and in their families.
Premorbid psychopathology As an effect of the increased survival rates, there is a growing interest in the psychological aspects of prevention, hospitalisation and recovery. The lifetime prevalence of psychiatric disorders is significantly higher than in normative samples (45). The overall prevalence rates range between 28 % and 75 % and the most frequent conditions are depression, psychosis, organic brain syndrome, personality disorder, and substance abuse/dependence (102). Considering only pre-burn anxiety and mood disorders, the lifetime prevalence is 38 %, and the corresponding rate for substance abuse is 55 % (44). Self-inflicted burn injuries constitute 0.4–14 % of the burn admissions, and there are some indications that the number of identified cases is increasing (146, 147). Premorbid psychopathology may indirectly or directly add to the risk of being burned (114, 137), to the severity of the burn, and to the length of hospitalisation (147). It has also been reported that burn patients have suffered more stressful life events during the year prior to the injury (98).
Aetiology and burn care The three main types of burn injuries are thermal, electrical and chemical. Thermal injuries are most common and are caused by intense or prolonged heat exposure such as a flame/flash, contact, radiation or a scald burn (62). The skin is one of the largest organs in the human body and it serves a number of vital purposes such as regulation of body temperature and protection against bacteria. A severe injury to the skin is therefore life threatening.
2 Acute burn care is characterised by intensive care procedures, wound care and surgical treatment. In addition, the patients need early mobilisation and positioning to control scarring and increase mobility (29, 62). One of the main challenges in burn care is pain management. Burn-related pain is usually at its worst during and after care procedures (135). The severity of a burn injury depends on the extent of the burn as calculated in percentage of the total body surface area that is burned, i.e. TBSA, and the depth of the burn. The skin consists of three layers: epidermis, dermis, and subcutis. Epidermal burns heal spontaneously and rarely need medical attention. Superficial dermal burns may close spontaneously and leave some changes in skin-colour, whereas the deep dermal burns may need surgical treatment in order to decrease scarring and time to wound closure. Subcutaneous, or full-thickness injury (TBSA-FT), can lead to permanent loss of sweat glands and hair, and sensation may be diminished for some time. It is always treated surgically and scarring is a major problem. Localisation of the burn is also important, and injury to functional and cosmetically important areas may require more surgical care to limit the visible alteration and the impact on mobility (94).
The process of adaptation Adaptation may be defined as an ongoing process of adjustment to the demands of a life situation with the aim of improved functioning. White wrote that “…adaptation does not mean either a total triumph over the environment or total surrender to it, but rather a striving toward acceptable compromise.” (159, p. 126). Burn trauma exposes the individual to significant adaptational demands in the somatic, psychological and social areas, but the specific challenges may vary during recovery.
The burn Healing of burns takes time. In follow-ups 14 to 24 months after the burn, about 90 % of the patients reported somatic complaints such as scars, pruritus, pain, sweating, heat sensitivity and loss of strength (134). Once the burn wounds have closed, the rebuilding of the skin continues for an extended time period. It is not uncommon for itching to persist up to 18 months after the burn (57), and even after that time there may be sensory deficits, especially in deeply burned areas (81).
Perceived health and quality of life In studies of perceived burn-specific health, psychological health ratings are often lower than those for physical health (14, 115). However, in a recent
3 Swedish study the areas comprising most problems were skin sensitivity to heat and the ability to work (69). At discharge from the hospital and after six months, most patients report more distress and lower satisfaction with life than normative samples (103). For burn patients in general, the first year after the burn injury is the most critical and the quality of life is reported to increase with time independently of TBSA (102). After two to 10 years, severely burned individuals do not differ from non-burned controls with regard to quality of life (6).
Psychological reactions Sleep problems, psychosis, behavioural problems, delirium, depression and anxiety are fairly common in the acute stage of recovery (102).
Depression In an early study, mild depression was clinically assessed in 15 % of the patients during hospitalisation (9). In recent studies using self-report instruments the rates are markedly higher, with 37 % classifying as mildly and 15 % as moderately to severely depressed during hospitalisation (109). After one month it is reported that 19 % are mildly, 28 % moderately and 26 % severely depressed (160). Later in recovery, about 12–22 % develop clinical depression (80, 144, 151). Although most studies indicate that symptoms decrease with time (102), the risk for depression has also been suggested to increase with time, as observed in a three-month follow-up (139) and cross-sectionally one to eight years after the burn (151).
Anxiety On a symptom-based level, about 90 % of all patients have some stress symptoms initially (36). The two main anxiety disorders that are studied in burn patients are Acute Stress Disorder (ASD) and Posttraumatic Stress Disorder (PTSD). ASD develops within the first four weeks after a traumatic event and is characterised by a fear reaction during the trauma, dissociation, intrusive images and thoughts, avoidance of reminders and symptoms of hyperarousal (7). In a study comparing several trauma groups, ASD was diagnosed in 10 % of the burn victims. This was not higher than in other trauma groups, but the burn patients expressed significantly more numbing and fear (58). Subjective life threat during the trauma has been found to be a strong indicator of long- term psychosocial problems in burn patients (82) and dissociation during the burn trauma has been related to poorer psychological outcome at discharge from the hospital (136). PTSD can emerge one month after the trauma or later and it is characterised by the same symptoms as ASD except for dissociation (7).
4 Between 8 % and 41 % of burn injured patients have been reported to meet the criteria for PTSD at some point during hospitalisation (107, 168) and after two to four months these figures vary between 9 % and 35 % (168). One year post-burn it has been reported that between 19 % and 45 % of the patients suffer from PTSD (22, 37, 106). In a follow-up after two to 10 years, 25 % of the former burn patients had some psychological problems, while this was true for only 12 % of the non- burned controls. As an example, burn patients displayed significantly more phobic anxiety (6).
There is no clear understanding of the predictors of psychological problems. The findings are contradictory for burn-specific and individual factors such as TBSA, length of hospitalisation, localisation of burn, sex, and psychological symptoms early in recovery (22, 37, 102, 106, 113, 140, 143).
Coping For most people, the expression “coping” means dealing with problems in a successful way. However, “coping” as a psychological concept is in itself neither positive nor negative. In a large part of the research literature, coping basically means efforts to enhance adaptation (73). Historically, one can identify three main directions in the study of psychological mechanisms and adaptation. The first was the psychoanalytical concept of defence mechanisms as unconscious ways of dealing with internal or external conflicts. Due to methodological and theoretical problems, such as the failure to distinguish defence mechanisms from adaptational outcome, this tradition is no longer prevailing in coping research (131). The second research direction was dominated by the transactional view of coping. Transactional coping is defined as “…ongoing cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person.” (73, p. 237). It has been proposed that the choice of a coping strategy is preceded by two cognitive processes (74). The first is an appraisal of what is at stake in the particular situation. For example does the situation involve a challenge, a threat of harm, or a harm that is already experienced? The second process has to do with the individual’s perceived options for coping: what can be done about the situation? These two cognitive appraisal processes are influenced by the personality traits of the individual and by environmental demands, and they mediate the type of coping strategy that is employed. Together with coping, the appraisal processes are also proposed to mediate emotional reactions. Coping strategies are categorised as either 1) problem-focused, defined as efforts to solve the problem that caused stress by acting on the
5 environment, or 2) emotion-focused, defined as efforts to change the way the situation is appraised or the meaning of the situation (73). Research based on the transactional theory has been criticised on several points. First, the personality dimension was in practice neglected in favour of the characteristics of the particular situation (131). Second, the categorisation of problem-focused and emotion-focused strategies is not always of practical value. Generally, an individual uses a variety of coping strategies in response to a complex stressful situation (49). Also, emotion- focused strategies have been difficult to distinguish from emotional reactions, i.e. the adaptational outcome (124). In the third research direction both personality traits and situational factors are acknowledged as determinants of coping and it is proposed that both personality and coping can be affected by situational stressors. The renewed interest in personality is partly due to modern theories of personality that have demonstrated a value of personality traits as predictors of behaviour. The third direction suggests that assessment of coping should be combined with assessments of personality traits and situational factors (131). In addition, there is the concept of dispositional coping, or “coping style”. Stable coping preferences are not restricted to a specific situation and are not identical with personality traits, but may develop from personality dispositions. Coping styles are proposed to be relevant for an individual across time and across many situations (27).
Papers I and III in this thesis are based on the transactional definition of coping with the addition of the views of the third research tradition, while paper V is based on the assessment of more stable coping styles.
Coping and health Habitual use of certain coping strategies is proposed to have a greater impact on health than the isolated use of some strategies (50). Coping is suggested to influence 1) the frequency, duration and intensity of stress responses, 2) the use of hazardous substances such as alcohol or the likelihood of impulsive behaviours, and 3) the enactment of health-promoting behaviours (see 50). It has been seen that those with poorer mental health use more of certain strategies, such as escapism/avoidance and support mobilisation, but that coping has an independent effect on health beyond premorbid health and degree of stress (5). Some health-related findings regarding the coping strategies that are central to this thesis are presented below. Social support seeking has been associated with higher levels of distress (5, 50), while focusing on the positive aspects in life (127) and accepting the problem (125) are strategies that generally are related to a better outcome. Mixed support has been seen for the problem-focused approach (105) and
6 venting of feelings (48, 123). However, structured processing of traumatic events is generally found to be adaptive (40, 119). Since different coping instruments have been used in the studies referred to above, the comparisons of adaptive value can only be tentative. Further, the adaptational value of a strategy may vary due to the specifics of the current problem and due to the definition and measurement of outcome (105). An example is the adaptive value of instrumental action, which may vary as a function of perceived efficacy of the strategies employed (5). Timing of measurement is also of importance. For instance, in a comprehensive meta-analysis, avoidant coping was found to be adaptive in the short term, possibly as a protection against overwhelming impressions, but maladaptive in the long run (132).
Coping in burn injured patients In a prospective study in which coping with burn-related problems was measured at two weeks post-burn, only acceptance was found to predict a better outcome three months later. Other forms of coping such as focusing on the positive, problem-focused coping, helpless coping, and the seeking of social support were related to more symptoms of PTSD and depression (140). In contrast, limited use of social support was predictive of PTSD at two, six and 12 months post-burn in another prospective follow-up of burn patients (106). Further, it has been reported that many burn patients use avoidant strategies (137). Avoidant coping has been related to poorer general psychological health, adjustment, and PTSD in burn victims at various time points after the burn (19, 22, 110, 140). The measures that have been used to assess coping in burn injured patients have been general coping measures, or measures designed for chronic pain patients. A problem with this approach is that several items in these questionnaires are not formulated to fit the stressors of a trauma patient who faces major life changes. When coping items do not match the problem, this may falsely appear as if the group has a very low use of coping overall (129). Also, general questionnaires are often extensive, containing about 60– 70 items, which may increase fatigue when used together with other instruments. This may have a negative effect on the validity of the responses or the participation rate. There is currently a lack of brief coping measures that would be suitable for the burn patient group. Further, most prospective studies on post-burn coping have been concerned with coping in the early stages after the burn. However, adaptation after discharge or in the long run may not be adequately predicted by the coping strategies employed in the acute stage, since the problems associated with being hospitalised are quite different from adversities after discharge.
7 Personality
The concept of personality may be defined as
“…a complex pattern of deeply embedded psychological characteristics that are largely non-conscious and not easily altered, expressing themselves automatically in almost every facet of functioning. Intrinsic and pervasive, these traits emerge from a complicated matrix of biological dispositions and experiential learnings, and ultimately comprise the individual’s distinctive pattern of perceiving, feeling, thinking, coping, and behaving.” (93, p. 4).
Personality traits, as measured by different self-rating scales, have been found to be relatively stable across several years. Rank-order stability coefficients of 0.76 to 0.84 have been reported for the five domains in the Revised NEO Personality Inventory over six to nine-year intervals (30) and between 0.36 and 0.86 (median 0.61) for subscales in the Karolinska Scales of Personality over a nine-year interval (55). In the latter study, retest stability was related to the internal consistency of each subscale. It is therefore vital to use personality inventories with good psychometric properties. Personality traits have been associated with mental health (34) and may predispose to trauma, as high levels of neuroticism and extroversion have been associated with a higher likelihood of exposure to traumatic events (16). Further, personality has been implicated as one determinant for several different somatic diseases (for a review see 116) and has been found to influence psychosocial adjustment after surgery (154). Personality is also a strong predictor of distress in follow-ups of patients with long-term health problems, such as rheumatic arthritis (42).
Personality traits in burn injured patients Burn patients in general score higher on neuroticism and extroversion, and lower on openness, agreeableness and conscientiousness than normal subjects (46). Neuroticism has been positively related to post-burn depression (142), low satisfaction with life (53), and more symptoms of PTSD (46), while extroversion has been associated with high life satisfaction (53) and fewer symptoms of PTSD (46). Personality traits may also have an impact on use of health care. It has been seen that patients who have higher somatisation scores are more likely to have reconstructive surgery than those with low somatisation scores (60). Since the groups did not differ in burn severity or burn localisation, the authors suggest that the higher levels of somatisation may contribute to a heightened awareness of appearance, bodily changes and physical symptoms, and thereby affect the use of health care.
8 In contrast, one study reported that most personality traits as measured upon discharge were not predictive of PTSD four months later, the only exceptions being lower levels of openness and narcissism (113).
In summary, the cited studies have reported associations between either personality traits or coping and post-burn adjustment. The literature regarding these issues is limited, some studies suffer from large attrition rates and the time to follow-up is generally rather short. Most of the existing studies have also failed to combine the assessment of coping and personality, as is recommended in the current coping literature.
Cognitive processes and post-trauma adjustment In cognitive theory it is proposed that PTSD is maintained by cognitive processes that lead to a feeling of current threat, even though the traumatic situation has passed (38). The processing style consists of 1) negative appraisals of the trauma and 2) a disturbance in autobiographical memory.
Negative appraisals Negative appraisals may consist of overgeneralisations of dangers in the environment or exaggerations of the probability of future traumas (38). They may also concern the individual’s self-esteem and self-blame for the trauma (72). Some individuals try to manage their fear by avoidant behaviour, which is one of the main criteria for a diagnosis of PTSD. Avoidance precludes a confrontation with and reassessment of the feared situation, and a vicious circle of avoidance and fear may thereby be established. The risk factors for developing a vicious circle are found in prior experiences, beliefs and coping, the state of the individual, trauma- characteristics, and cognitive processing during the trauma, such as perceived life threat (38).
Autobiographical memory Autobiographical memories are episodic memories concerning personal experiences that are defined to some degree in time and place (112). Trauma memories are often shattered, and sudden recollections of sensory impressions can be triggered involuntarily. These intrusive recollections constitute another main feature of PTSD. Intrusions are believed to be autobiographical memories that are poorly organised and that are not put in a relevant context with regard to time, place and other autobiographical material (38).
9 Autobiographical memories can be either general or specific (161). General memories are summaries of several different events such as “when I was at school”, and specific memories refer to an isolated incident such as “my first day in school”. In the Autobiographical Memory Test (AMT) (164) the participant is asked to recall specific personal memories in response to cue words (e.g. “sad”). Retrieval of specific memories is dependent upon encoding of personal experiences and a hierarchical retrieval process. The cause of overgeneral retrieval in emotionally disturbed individuals is not well known, but several suggestions have been made such as affect-dependent encoding of events, insufficient contextual cues when asked to retrieve a memory, and deficient cognitive resources to conduct a memory search (163). It is believed that the hierarchical retrieval process begins at a general level and progresses to a specific level. Overgeneral responses may therefore be the result of a premature interruption of the retrieval process (163). Overgeneral responses have been seen in patients with parasuicidal behaviour and depression (10, 161, 162), deficient problem-solving ability (41), ASD (59), PTSD (90, 91), and chronic health problems such as insulin- dependent diabetes mellitus (75). Though individuals with depressed mood generally perform poorly on the AMT, several findings suggest that specificity is not merely a facet of current mood (70, 75, 156). Another way of assessing memory efficiency with the AMT is to measure response latencies. Here the findings are inconsistent, some showing no group differences (59, 91) and some showing that emotionally distressed individuals have longer latencies than controls, especially to positive cue words (90, 161, 162).
Attentional processes In addition to being related to a memory disturbance, intrusions are also thought to depend on strong perceptual priming. Traumatic situations foster a conditioning process, where certain stimuli (that may be harmless) become associated with emotions that are felt during the traumatic event. Later, the trauma-related emotions are easily triggered by stimuli that are reminders of the event (38). One way perceptual priming can be approached is by studying attentional processes such as attentional bias. Attentional bias can be assessed with the Stroop task, a method developed to study interference effects on attention (130). In this task the participant is instructed to name the colour of a word while ignoring the meaning of the word. If the word Green is written in a blue colour, the consequence is an interference effect, resulting in an increased response time. There are a number of more or less plausible theories aiming to explain this interference effect (for a review see 79). One of the more recent theories, reviewed by MacLeod (79), is the “Parallel Distributed Processing Model”,
10 which suggests that processing of stimuli from input to output occurs via a network of pathways. If two conflicting stimuli are simultaneously activated, they will interfere with each other and the “strongest” pathway will determine the response. Strength is based on the connections within the network, it is affected by repeated activation and attention is suggested to be a moderating factor. The Stroop task has also been modified to study interference effects for words with an emotional meaning (165). Here the response latencies of emotional and neutral words are compared, for example Death written in blue and Sheet written in green. A proposed cause of the “emotional Stroop effect” is that words that remind of past experiences and emotions attract attention and require a longer response time. The emotional Stroop task can be used to study preoccupations such as ruminations and intrusions that may be difficult to assess with self-report measures alone (89, 165). The emotional Stroop effect has been seen in a wide range of psychiatric conditions such as mood and anxiety disorders (for a review see 165). The long-term perspective is not well explored, as few have investigated a traumatised, but recovered, group. In a follow-up of a ferry disaster, a Stroop effect for disaster-related words was present five years after the event. The effect was especially strong in participants with severe PTSD (141), suggesting that the emotional Stroop effect is proportional to the level of symptomatology.
Participant reactions to postal questionnaires The use of self-report questionnaires has become widespread in health outcome studies, as they are cost-effective, easy to administer and free from systematic interviewer bias. Outcome after a major physical trauma is multifaceted and requires several evaluative measures, which makes surveys quite extensive and disclosing. When surveys concern sensitive or traumatic issues such as life-threatening experiences, the participants may react negatively and report a feeling of intrusion or increased distress, especially if they suffer from PTSD (101). This constitutes an ethical problem. Medical research is obligated to follow the principles of the Helsinki declaration (1), which states that it is the
“…duty of the physician in medical research to protect the life, health, privacy, and dignity of the human subject.” and “…to minimize the impact of the study on the subject’s physical and mental integrity and on the personality of the subject.”
Individual factors may be of importance regarding participant reactions. For instance, it has been seen that participants who are dissatisfied with
11 being part of a study have higher ratings on maladaptive personality traits such as neuroticism, less social desirability, more symptoms of anxiety and depression, and a higher educational level (61, 66). In spite of the popularity of postal questionnaires in health outcome studies, there is limited knowledge about trauma patients’ reactions to participating in a postal survey.
12 Aims of the thesis
Adaptation after a severe burn injury may be influenced by a multitude of factors. Few have addressed the relationship between characteristics of the trauma, coping and personality, and few have investigated other cognitive processes in burn injured patients. The principal aim of this thesis was to gain knowledge concerning psychological risk factors and protective factors involved in recovery after burn injury.
Specific aims 1. To develop a brief coping questionnaire that is suitable for individuals who have suffered a burn injury and validate it against perceived health status. 2. To compare personality ratings in former burn patients with a normative sample. 3. To explore the existence of coping patterns and the associations between coping, burn-specific factors, personality traits and post- burn adaptation in former burn patients. 4. To investigate the existence of memory bias and attentional bias in former burn patients. 5. To predict psychological health at three months post-burn using coping, life events, perceived life threat and burn-related factors as predictors. 6. To explore former burn patients’ reactions to answering a trauma- focused postal survey.
13 Methodology
Participants and procedure This thesis is based on three separate samples of burn patients treated in the Burn Unit at Uppsala University Hospital. Papers I, II, III and IV are investigations conducted in a group of recovered burn patients who were treated between the years 1980 and 1995. In paper IV, there is also a matched control group of non-burned volunteers. Paper V is a prospective study of consecutive patients, treated between the years 2000 and 2002, and paper VI is based on an investigation of the recovered patients who were injured between 1996 and 2000. Socio-demographic data regarding the six papers are shown in Table 1, and burn-related data are shown in Table 2.
Table 1. Socio-demographic characteristics of the participants in papers I–VI
Total Paper sample N M/F Mean age Range Sample I 227 162 127/35 50.4 (14.3) 20–83 1980–1995 II 227 166 132/34 50.3 (14.2) 20–83 1980–1995 III 227 161 127/34 50.4 (14.4) 20–83 1980–1995 18 18 16/2 46.0 (11.4) 21–59 1980–1995 IV 18 18 16/2 43.3 (11.1) 22–62 Controls V 40 34 27/7 45.6 (14.4) 19–89 2000–2002 VI 116 78 57/21 46.1 (17.1) 18–87 1996–2000 SDs are put in parentheses. M/F = males/females
14 Table 2. Burn-related characteristics of the participants in papers I–VI
Paper N YPB TBSA LOS Sample I 162 11.4 (4.5) 24.0 (16.0) 29.8 (25.0) 1980–1995 II 166 11.4 (4.5) 24.6 (16.3) 30.2 (25.0) 1980–1995 III 161 11.4 (4.5) 24.0 (16.0) 29.8 (25.0) 1980–1995 IV 18 11.8 (4.8) 17.9 (10.4) 16.6 (14.3) 1980–1995 V 34 – 20.4 (21.0) 20.4 (21.1) 2000–2002 VI 78 3.9 (1.2) 17.1 (14.7) 21.1 (21.5) 1996–2000 SDs are put in parentheses. YPB = mean Years Post-burn, TBSA = mean Total Body Surface Area burned (%), LOS = mean Length of Stay in the Burn Unit (days)
The methodology and results sections highlight the main parts of the data in papers I–VI. For more detailed information, the reader is referred to the individual papers.
In 1996, 334 former burn patients were approached with the aim of assessing health status (data not shown in this thesis). Inclusion criteria were: a burn injury of more than 10 % TBSA or a Length of Stay in the Burn Unit (LOS) of seven days or more, and an age of 18 years or more at the time of investigation. A total of 248 former patients (74.3 %) returned the health form referred to as the Burn Specific Health Scale-Brief (BSHS-B) (68). These 248 responders constituted the basis for selection of participants in papers I–IV. In papers I–III, all former burn patients who had been 15 years or older at the time of injury were approached a second time. The age limit was set to increase the likelihood that the participants had memories of the time period after hospital discharge. This selection rendered a sample of 227 former patients. Information regarding the study purpose, questionnaires and a pre- paid response envelope were mailed to the former patients. Reminder letters and questionnaires were sent one month later. In paper I, the number of eligible participants is mistakenly stated to be 223. A thorough examination of the data file was performed and subsequent corrections were made in the background data based on medical records. Therefore figures regarding age, TBSA and LOS in paper I are not entirely correct, although the differences are small. The correct figures are shown in Tables 1 and 2. When correcting the data it was also decided that one respondent should be excluded from further analyses (papers II and III) due to missing values on the BSHS-B. The correct response rates are 71.3 % (n = 162) in paper I, 73.1 % (n = 166) in paper II and 70.9 % (n = 161) in paper III. Socio-demographic data and burn-related variables did not differ between men and women or between responders and non-responders.
15 However, the non-responders reported significantly lower health status on three of the BSHS-B subscales: Affect (p<0.01), Interpersonal Relationships (p<0.01) and Sexuality (p<0.01). When counting the 162 participants in paper I, they also had lower ratings on the subscale Work (p<0.05). In paper IV, a convenience sample of 18 former burn patients was approached. The inclusion criteria were: age between 18 and 65 years and a home address within 200 kilometres from Uppsala to facilitate home visits. Eighteen non-burned controls were recruited from work sites in Uppsala including a construction company, a power plant and an installation and service company. The samples were matched for sex and approximately matched for age and education. The interviews and the testing were performed by the author of this thesis and the second author of paper IV. Both test leaders were present during all testing, which took place in the homes of the participants, at work, or at the Uppsala University Hospital. In paper V, consecutive burn patients who were victims of accidents were included if they were 1) 18 years of age or older, 2) Swedish-speaking 3) and had no cognitive dysfunction. Eligible participants received both verbal and written information about the study purpose, and 34 patients (85 %) agreed to participate. Those who did not participate were considerably older (mean 64.3 years), but did not differ regarding other characteristics. The participants were interviewed at the bedside and also filled in several questionnaires as soon as their medical state allowed. Three months after they were injured, the patients received postal questionnaires and a pre-paid response envelope. Reminder letters and questionnaires were required in six cases, and were sent within one month. The interviews were performed by the author of this thesis, who is not a part of the regular staff at the Burn Unit. In paper VI, the participants were former burn patients who were more than 18 years of age at inquiry and Swedish speaking. A survey of 307 questions was sent to 116 patients together with an information letter. The survey contained an open-ended question regarding what it had been like to answer the questionnaire, and 78 participants (67 %) shared their views. Background data did not differ between the responders and the non- responders except for a higher degree of substance abuse in the non- responders [χ2 (1) = 9.8, p<0.01]. Former patients with self-inflicted injuries did not differ regarding response rate.
16 Assessments and measures
Coping In paper I, a questionnaire containing 35 items was constructed on the basis of coping research, biographical descriptions by burn victims, and discussions with a burn nurse, a plastic surgeon and a clinical research psychologist. Inspiration for the selection and wording of items was mainly found in the Revised Ways of Coping Checklist (49), the COPE (27) and the Brief COPE (25). The wording of the items was retrospective and several items were burn or trauma-related. The scale was 1 = “Does not apply/not used”, 2 = “Used somewhat”, 3 = “Used quite a bit”, and 4 = “Used a great deal”. Time after burn injury varied widely and since life situation is suggested to influence the choice of coping strategy, an attempt was made to standardise the situation: the participants were instructed to think about the time after discharge from the hospital. The questionnaire will be referred to as the Coping with Burns Questionnaire (CBQ). The structure of the questionnaire is described in the Results section of paper I. The CBQ-data were also used in paper III. In paper V, a modification of the CBQ was used as a structured interview during hospitalisation. All burn-related words were omitted or replaced with general words (e.g. “the problem”) and the patients were asked how they usually coped with life events, not counting the recent burn. The interview is referred to as the Coping with Trauma Interview (CTI). In order to make the response alternatives easier to understand, the word “used” was replaced with “did”.
Burn-specific health Health status was measured with the Burn Specific Health Scale-Brief (BSHS-B). The BSHS-B is based on the Abbreviated Burn Specific Health Scale (BSHS-A) (95) containing 80 items, and the Revised Burn Specific Health Scale (15) containing 31 partly overlapping items. The 91 items that remained after duplicates had been removed were sent to the former burn patients in 1996. The BSHS-B was derived in a principal components factor analysis and consists of 40 items divided into nine subscales: Simple Abilities (in paper I: Simple Functional Abilities), Heat Sensitivity, Hand Function, Treatment Regimens, Work, Body Image, Affect (in papers I and III: Affective), Interpersonal Relationships (in paper I: Family), and Sexuality (Table 3). The items were rated on a scale of 0 = “All the time/great difficulty” to 4 = “Never/no difficulty”. The alpha values ranged between 0.75 and 0.93 (68).
17 Table 3. Description (desc.) of subscales in the BSHS-B and the SSP
BSHS-B subscales Desc. of subscale contents Simple Abilities Ability to bathe, dress, get in and out of a chair Heat Sensitivity Bothered by hot weather and sun, sensitive skin Hand Function Ability to tie shoelaces, use knife and fork, pick up a coin, unlock a door, etc. Treatment Regimens Taking care of the skin is a bother Work Perceived ability to work is impaired by the burn Body Image Bothered by general appearance and scars Affect Feeling lonely, sad or trapped Interpersonal Estranged from the family because of the burn Relationships Sexuality Less interested in sex or unable to have sex after the burn SSP subscales Desc. of individuals with high scores (54) Somatic Trait Anxiety Autonomic disturbances, restless, tense Psychic Trait Anxiety Worrying, anticipating, lacking self-confidence Stress Susceptibility Easily fatigued, uneasy when urged to speed up Lack of Assertiveness Lacking assertiveness in social situations Detachment Avoiding engagement in others, withdrawn Embitterment Unsatisfied, blaming and envying others Trait Irritability Irritable, lacking patience Mistrust Suspicious, distrusting people's motives Impulsiveness Acting on the spur of the moment, non-planning Adventure Seeking Avoiding routine, need for change and action Social Desirability Socially conforming, friendly, helpful Verbal Trait Getting into arguments, berating people when Aggression annoyed Physical Trait Getting into fights, starts fights, hits back Aggression
18 Personality traits Personality traits were measured with the Swedish universities Scales of Personality (SSP) (54). The SSP is based on the Karolinska Scales of Personality (KSP), which was rationally developed with the aim of assessing vulnerability for psychopathology. Most subscales in the KSP have shown a satisfactory internal consistency and stability over time (55). The SSP is a shortened and psychometrically enhanced version of the KSP. It contains 91 items divided into 13 scales with seven items each: Somatic Trait Anxiety, Psychic Trait Anxiety, Stress Susceptibility, Lack of Assertiveness, Detachment, Embitterment, Trait Irritability, Mistrust, Impulsiveness, Adventure Seeking, Social Desirability, Verbal Trait Aggression, and Physical Trait Aggression. For a description of the subscales, see Table 3. The items were rated on a scale of 1 = “Does not apply at all”, to 4 = “Applies completely”. T-scores are calculated for each gender separately. It was standardised in a representative Swedish sample and the Cronbach’s alpha values varied between 0.59 and 0.84 (54). In the present sample the Cronbach’s alpha values ranged between 0.66 and 0.85. A factor analysis of the 13 subscales resulted in a three-factor solution in the original publication (54). Recently, this structure was confirmed in a large community sample of women (85).
Cognitive tests In paper IV, the Autobiographical Memory Test (AMT) was performed according to the recommendations of Williams (164). Twenty positive and negative cue words were presented visually on cards and were also read aloud to the participants. All words denoted emotions and the participants were instructed to describe a particular situation when they had felt that feeling. Testing started after the participant had presented a specific memory in the practice session. The test leader registered the time to first response with a stopwatch, and a maximum of 30 seconds was given. If the first response was general, the participants were prompted to deliver a specific memory. Also in paper IV, a computerised emotional Stroop task was performed using a modified version of a computer program developed by Lundh et al. (78). The words were burn or trauma-related and all words had a matched neutral control word. The words appeared on the screen one by one, and each word was shown four times in different colours and in random order. The total number of trials was 192. The instructions were given both verbally and on the screen. Time to response was registered when the test leader pressed a key on the computer. This procedure was chosen as some patients could have motor deficiencies due to the burn.
19 In paper IV, the Controlled Oral Word Association Test (COWAT) (76) was performed to control for verbal fluency. The COWAT has been linked to mental flexibility, and is often used as an indicator of executive functioning. The task is to name as many words as possible that begin with a specified letter. The time limit was 60 seconds for each letter. Total scores were adjusted for age, educational and gender differences according to established recommendations (76).
Cognitive status In paper IV, information regarding perceived cognitive status was gathered in a structured interview. Perceived current stress or loss of consciousness was registered as present or absent. In paper V, the Mini Mental State examination was performed when a cognitive dysfunction was suspected (51). Patients who showed signs of cognitive dysfunction were excluded from the study.
Life events In papers IV and V, the number of life events was assessed with the List of Threatening Experiences Questionnaire (LTE-Q). The LTE-Q is composed of 12 events and two subscale scores, one for the previous year (LTE-Q past year/1 year) and one for the individual’s lifetime (LTE-Q Lifetime) (20, 21).
Psychological health In papers IV–VI, the Hospital Anxiety and Depression Scale (HADS) (169) was administered to assess current mood. The HADS is designed for use in non-psychiatric groups, it is used extensively in health care, and it has been evaluated in several clinical populations with satisfactory results (13). The two subscales, Anxiety and Depression, have seven items each that are rated on a scale of 0–3. The range 0–7 is considered as no/low symptomatology, 8–10 as moderate symptomatology and 11 or more as high symptomatology (169). Reported Cronbach’s alpha values fall in the range of 0.81 to 0.89 for the two subscales (13). Also in papers IV–VI, the Impact of Event Scale-Revised (IES-R) was administered to assess symptoms of PTSD. The IES-R contains 22 items divided into three subscales: Intrusion, Avoidance, and Arousal. The items were rated from “Not at all” to “Often” on a scale of 0, 1, 3, and 5 (155). The range is 0–8 for no/low symptomatology, 9–19 for moderate symptomatology, and 20 and above for high symptomatology (64). Reported Cronbach’s alpha values fall in the range of 0.65 to 0.92 for the three subscales (133, 155).
20 In paper VI, the presence of nightmares was also assessed with one question taken from the BSHS-A (95) and rated from 0 = “Never” to 4 = “All the time”.
The burn accident In paper V, a structured interview at the patient’s bedside included the following: • Subjective life threat during the burn accident. • Dissociation during the burn accident. This part of the interview was inspired by the Peritraumatic Dissociative Experiences Questionnaire–Rater Version (83). • Intake of alcohol or drugs before the accident.
Socio-demographic and injury-specific data In papers I–III all data were collected from medical records. In papers IV and V, injury-specific data were taken from medical records and socio- demographic data were gathered in a structured interview. In paper VI, injury-specific data were taken from medical records, while socio- demographic data and data regarding aftercare and sick-leave were collected in the survey.
Acceptance of the questionnaires In paper VI, the participants’ reactions to the survey were assessed by the following open-ended question: “What was it like for you to answer these questions?”
Statistical analyses In paper I, principal components factor analysis was used and Cronbach’s alpha values were calculated for the resulting subscales. In this thesis, the term factor analysis will be used interchangeably with the term principal components factor analysis. The factor analysis followed the recommendations of Hair et al. (56). Pearson correlation coefficients between the CBQ and the BSHS-B were examined. In paper II, the burn patients’ scores on the SSP were adjusted for systematic age changes in the normative sample and then compared to the normative data with Student’s t-tests. The SSP-scales were factor analysed and Cronbach’s alpha values were calculated for each factor. In paper III, the data from papers I and II were reanalysed. The CBQ scores were z-transformed and then cluster analysed with two separate
21 methods, K-means (4) and Ward’s method (152). The resulting groups were compared regarding scores on the BSHS-B and the SSP in Analyses of Variance (ANOVA). In paper IV, the response latencies on the AMT and the Stroop task were evaluated in 2x2 (participant group x word type) repeated measures ANOVAs. For the Stroop task, two difference scores were calculated for each participant and compared within each participant group using paired t- tests. Student’s t-tests and Pearson correlation coefficients were computed for background variables. In paper V, some variables were skewed and therefore square root or log transformed before analysis. Paired t-tests were used to examine changes in symptoms over time. Pearson correlation coefficients were used in the selection of predictor variables for the multiple regression analyses. A limit was set at p<0.25 (65) and a maximum of six variables were included in each model (56). The multiple regression was followed by backward elimination of non-significant variables. The adjusted R2 was used as a measure of explained variance, since it adjusts for the number of participants and the number of independent variables. In paper VI, interrater agreement was assessed with average Cohen’s kappa (28). Chi square was used for categorical data and Fisher’s Exact test was applied when appropriate. Student’s t-test, ANOVA and the Bonferroni/Dunn post hoc test (35) were used for group comparisons.
Ethics Papers I–VI were performed according to the principles of the Helsinki declaration (1) and were approved by the Uppsala University Ethics Committee. Participants in papers I–IV and VI received a small reward.
22 Results
Development of the Coping with Burns Questionnaire (paper I) The responses to the coping items were factor analysed. Based on the scree plot and intelligibility, six factors were derived, explaining 54 % of the total variance. The limit for factor loadings was set at 0.40. Two of the 35 items obtained very low factor loadings and were omitted, leaving 33 items in the final version of the CBQ. The factors, mean scores and Cronbach’s alpha values are displayed in Table 4.
Table 4. Number of items, means, Cronbach’s alpha values and description of the items in the CBQ-factors (n = 162)
CBQ-factor Items Mean α Description of items Revaluation/ 8 2.4 (0.7) 0.83 Adjust life style to injury, Adjustment experience meaning, not think about difficulties Avoidance 7 2.0 (0.7) 0.78 Daydream, use wishful thinking, use substances, avoid people/activities Emotional 3 2.5 (0.7) 0.56 Seek social contact and Support support of the emotional kind Optimism/ 8 2.9 (0.6) 0.82 Make efforts to solve Problem problems. Optimistic view of solving the future Self-control 3 2.2 (0.8) 0.60 Restrained emotional expression Instrumental 4 1.7 (0.7) 0.67 Seek practical help/advice, Action instrumental ways of problem solving SDs are put in parentheses
23 In paper I it is stated that there were no secondary loadings in the factor solution, but upon thorough scrutiny one double loading was found for the item “I thought of the things that are really important in life” in Factor 1 (loading 0.459) and 4 (0.397). There were several significant correlations between the CBQ and the BSHS-B subscales (Table 5).
Table 5. Correlations between scores on the CBQ and the BSHS-B (n = 161)
BSHS-B CBQ-factors RA AV ES OP SC IA SA -0.23 ** -0.28*** 0.07 -0.12 -0.11 -0.16* HS -0.11 -0.34*** 0.15 0.07 -0.10 -0.10 HF -0.11 -0.20** -0.03 -0.01 -0.07 -0.21** TR -0.12 -0.30*** 0.12 0.02 -0.14 -0.12 W -0.14 -0.29*** 0.22** 0.04 -0.15* -0.17* BI -0.14 -0.50*** 0.16* 0.15* -0.16* -0.02 A -0.13 -0.59*** 0.27*** 0.11 -0.28*** -0.11 IR -0.11 -0.41*** 0.31*** 0.10 -0.13 -0.01 S -0.03 -0.37*** 0.18* 0.16* -0.05 -0.13 * p<0.05 ** p<0.01 *** p<0.001 RA = Revaluation/Adjustment, AV = Avoidance, ES = Emotional Support, OP = Optimism/Problem solving, SC = Self-control, IA = Instrumental Action, SA= Simple Abilities, HS = Heat Sensitivity, HF = Hand Function, TR = Treatment Regimens, W = Work, BI = Body Image, A = Affect, IR = Interpersonal Relationships, S = Sexuality
Revaluation/Adjustment, Avoidance, Self-control and Instrumental Action were negatively associated with the BSHS-B. Negative associations indicate that use of the coping strategy is related to a poorer health status. In contrast, Emotional Support and Optimism/Problem solving were positively related to the BSHS-B. Overall, the CBQ was not related to sex, age, YPB or TBSA. The only exception was age at time of investigation, which correlated with Emotional Support (r = -0.18, p<0.05), indicating that younger individuals use this strategy to a greater extent than those who are older. The principal components analysis in paper I is based on 162 respondents. A second analysis based on the 161 participants in paper III did not show any substantial differences (data not shown). Since the excluded participant had many missing values on the BSHS-B, this individual was already excluded from the correlation analyses in paper I and these results were therefore not affected by the later exclusion.
24 Assessment of personality traits in former burn patients (paper II)
The former burn patients’ scores on the SSP were compared with the normative sample. Burn patients had higher means on four scales: Somatic Trait Anxiety [t (903) = 3.4, p<0.001], Stress Susceptibility [t (904) = 3.1, p<0.01], Lack of Assertiveness [t (904) = 2.5, p<0.01], and Impulsiveness [t (904) = 2.8, p<0.01]. The former patients’ scores were factor analysed and a three-factor solution was derived: 1) Neuroticism (N), 2) Sensation Seeking (SS) and 3) Aggressiveness (Agg) (Table 6). Cronbach’s alpha values for the three factors were 0.90, 0.70 and 0.65 respectively. The factor structure was largely in agreement with an analysis performed on the normative sample (54). The three factors were not related to age, age at time of injury, YPB, TBSA, TBSA-FT or LOS. Based on the present factor analysis, summated scale means were calculated in both the burn and the normative samples. The burn patients had slightly higher ratings on N [t (897) = 2.0, p<0.05] than the normative sample, but did not differ with respect to SS or Agg.
Table 6. Factor analysis of the SSP (n = 166)
SSP factors SSP-subscales Neuroticism Sensation SeekingAggressiveness Somatic Trait Anxiety 0.79 0.26 0.14 Psychic Trait Anxiety 0.89 -0.01 0.10 Stress Susceptibility 0.78 -0.17 0.26 Lack of Assertiveness 0.80 -0.13 -0.19 Detachment 0.61 -0.20 0.38 Embitterment 0.76 0.27 0.21 Trait Irritability 0.63 0.29 0.45 Mistrust 0.67 0.33 0.33 Impulsiveness 0.22 0.77 0.20 Adventure Seeking -0.16 0.87 0.03 Social Desirability -0.07 0.27 -0.78 Verbal Trait Aggression 0.32 0.35 0.72 Physical Trait 0.09 0.31 0.65 Aggression Significant loadings are in bold type, and underlined figures in italics indicate a double loading
25 Exploration of coping patterns in burn injured adults (paper III) The CBQ data were cluster analysed and both cluster analyses that were employed yielded three clusters. The agreement between the solutions was 73 % and the K-means cluster solution was accepted. The first coping cluster, Extensive copers, had positive z-scores for all coping strategies. The second cluster, Adaptive copers, seemed to prefer Emotional Support and Optimism/Problem solving to other strategies and had the lowest use of Avoidance. The third cluster, Avoidant copers, had a high use of Avoidance compared to other coping strategies. The clusters are presented graphically in Figure 1.
1,5
1,0
0,5 1. Extensive
0,0 Z-scores 2. Adaptive 3. Avoidant -0,5
-1,0
-1,5 ES OP AV RA SC IA
Figure 1. Z-values on the CBQ for the three coping clusters. ES = Emotional Support, RA = Revaluation/Adjustment, OP = Optimism/Problem solving, SC = Self-control, AV = Avoidance, IA = Instrumental Action
The cluster means on the BSHS-B and the SSP were compared. For the BSHS-B, group differences were found for Simple Abilities [F (2, 158) = 4.6, p<0.05], Heat Sensitivity [F (2, 158) = 4.3, p<0.05], Work [F (2, 158) = 6.2, p<0.01], Body Image [F (2, 157) = 7.0, p<0.01], Affect [F (2, 158) = 13.2, p<0.0001], Interpersonal Relationships [F (2, 157) = 11.1, p<0.0001], and Sexuality [F (2, 158) = 4.7, p<0.05]. For the SSP-factors the means differed regarding Neuroticism [F (2, 155) = 18.7, p<0.0001] and Aggressiveness [F (2, 154) = 4.9, p<0.01]. The results of the post hoc tests are displayed in Table 7. The Avoidant copers had poorer health ratings and more maladaptive traits than both the Adaptive and the Extensive copers. The Extensive copers took an intermediate position and had poorer ratings than the Adaptive copers on three health scales but they did not differ in personality scores. The three clusters did not differ regarding age, age at time of injury, YPB, TBSA, TBSA-FT or LOS.
26 Table 7. Comparison of CBQ cluster means on the BSHS-B scales and the SSP-factors (n = 161)
BSHS-B scales CBQ cluster differences (p-values) a Extensive > Adaptive > Adaptive > Avoidant Avoidant Extensive Simple Abilities ns ns <0.05 Heat Sensitivity ns <0.05 ns Hand Function ns ns ns Treatment Regimens ns ns ns Work ns <0.01 <0.05 Body Image ns <0.01 ns Affect <0.05 <0.001 <0.05 Interpersonal Relationships <0.05 <0.001 ns Sexuality ns <0.05 ns Extensive < Adaptive < Adaptive < SSP-factors Avoidant Avoidant Extensive Neuroticism <0.01 <0.001 ns Sensation Seeking ns ns ns Aggressiveness ns <0.05 ns ª The signs (>) and (<) denote the direction of the difference
Cognitive distortions in recovered burn patients (paper IV)
The Autobiographical Memory Test The percentage of specific responses was 55.8 % (SD = 25.4) in the former burn patients and 64.6 % (SD = 22.9) in the control group, but the means did not differ significantly. The former patients had longer response latencies across all words [F (1, 34) = 8.0, p<0.01], but in separate analyses the effect was seen only for the negative words [F (1, 34) = 9.5, p<0.01].
The Stroop task The recovered burn patients responded with longer latencies than the control group for both Burn words and Neutral words [F (1, 34) = 7.6, p<0.01] and for both Trauma words and Neutral words [F (1, 34) = 10.3, p<0.01]. There
27 were no interactions between group and word type. When only considering the burn patients, there were longer latencies for Burn words than for Neutral words [t (17) = 2.3, p<0.05]. No such effect was present in the control group. Two difference scores (Burn – Neutral word, Trauma – Neutral word) were calculated. For the former burn patients, the difference scores for the Burn words were significantly larger than for the Trauma words [t (17) = 2.8, p<0.05], while no difference was seen in the control group (Figure 2).
25
20 15 10 Milliseconds Diff. Burn 5 words 0 Diff. Trauma -5 words -10 -15 Recovered Control burn patients group
Figure 2. Difference scores on the emotional Stroop task compared separately for the recovered burn patients and the control group using paired t-tests. In paper IV, the figure shows -7.6 instead of -0.76 for Burn words for the control group. This has been corrected in the present display.
When categorising the data according to those who displayed an emotional Stroop effect and those who did not (regardless of the magnitude of the effect), 12 of 18 participants in each group displayed a burn-related Stroop effect. Regarding Trauma words, eight former burn patients and seven controls displayed a Stroop effect. These categorisation data were not presented in paper IV. The groups did not differ with respect to reported cognitive status, non- responses or the HADS. However, the recovered patients had a lower mean on the COWAT [t (34) = 2.7, p<0.05], suggesting poorer executive functioning, and the control group reported more threatening life events on the LTE-Q Lifetime [t (33) = 2.1, p<0.05]. Means and SDs are displayed in Table 8. In correlation analyses, performances on the AMT and the Stroop task were not related to reported cognitive status, the HADS or the IES-R.
28 Table 8. Means and SDs for the COWAT, HADS, LTE-Q, and IES-R
Burn Patients (n = 18) Controls (n = 18) Mean Range Mean Range p-value COWAT 33.0 (9.3) 18–51 42.2 (11.4) 24–68 <0.05 HADS 8.1 (5.3) 1–19 9.6 (5.3) 3–21 ns LTE-Q 1 year 1.2 (1.3) 0–5 1.2 (1.5) 0–5 ns LTE-Q Lifetime 3.4 (2.6) 0–8 5.1 (1.8) 3–9 <0.05 IES-R a 19.2 (18.6) 0–63 SDs are put in parentheses. a The IES-R was only filled in by the recovered burn patients
Prediction of psychological health following accidental burn (paper V) In the interviews with the consecutive burn patients it was found that 12 patients had felt life threat, five reported dissociation and eight had been affected by alcohol or drugs just before or during the accident. The patients reported 1.1 life event on average (SD = 1.5, 0–5) for LTE-Q 1 year, and 4.8 (SD = 2.5, 1–10) for LTE-Q lifetime. The mean scores on the CTI scales ranged between 1.8 (CTI Avoidance) and 2.5 (CTI Optimism/Problem solving) for the whole group, and the SDs ranged between 0.6 and 0.8. The individual mean scores ranged between 1.0 and 4.0. For means and SDs on the HADS and the IES-R, see Table 9.
Table 9. Mean scores and SDs on the HADS and the IES-R at baseline and after three months (n = 34)
Baseline Three months Mean SD Range Mean SD Range HADS Anxiety 4.6 4.4 0–21 5.5 4.6 0–20 HADS Depression 5.1 5.9 0–21 4.4 4.7 0–16 IES-R Intrusion a 10.8 9.0 0–35 13.6 10.0 0–35 IES-R Avoidance 8.6 9.4 0–31 10.8 11.8 0–40 IES-R Arousal a 3.4 4.6 0–25 9.0 8.2 0–26 a Baseline and three-month scores differed significantly (p<0.001)
29 Paired t-tests showed that scores on the IES-R Intrusion [t (33) = 5.0, p<0.0001] and Arousal [t (33) = 4.2, p<0.001] scales had increased significantly after three months. Multiple regression analyses were performed with the subscales of the HADS and the IES-R as dependent variables. In a second step non- significant variables were removed, starting with the poorest predictor. Female sex and most of the predictor variables were positively related to psychological symptoms. The only exceptions were CTI Emotional Support, Optimism/Problem solving, Self-control, and in one instance LTE-Q Lifetime. The results of the second step are displayed in Table 10.
Table 10. Prediction of psychological symptoms after three months (n = 34)
HADS Anxiety Beta p-value HADS Depression Beta p-value Baseline Anxiety 0.51 0.001 Baseline Depression 0.44 0.003 CTI Avoidance 0.36 0.016 CTI Avoidance 0.41 0.005 R2 = 0.40, Adj R2= 0.36, p<0.001 R2 = 0.49, Adj R2 = 0.46, p<0.001
IES-R Intrusion Beta p-value IES-R Avoidance Beta p-value Baseline Intrusion 0.47 0.004 Baseline Avoidance 0.48 0.003 Life threat 0.32 0.036 CTI Avoidance 0.30 0.048 CTI Self-control -0.41 0.007 R2 = 0.38, Adj R2 = 0.34, p<0.001 R2 = 0.45, Adj R2 = 0.39, p<0.001
IES-R Arousal Beta p-value Age 0.36 0.029 Life threat 0.37 0.025 R2 = 0.25, Adj R2 = 0.20, p<0.05 Adj R2 = Adjusted R2
Acceptance of a trauma-focused postal survey (paper VI) The three co-authors independently categorised the responses to the question “What was it like for you to answer these questions?” Average Cohen’s kappa was 0.91, suggesting a good interrater agreement. Three groups were found: Positive (55 %), Effort (32 %) and Negative (13 %). Only four (5 %) individuals indicated that they had felt intruded upon. They were all
30 categorised as having negative responses. Patients with self-inflicted injuries were evenly distributed across the three groups. The three groups were then compared regarding personality traits and health. The Positive group had a lower mean on the SSP-scale Mistrust than the Negative group [F (2, 74) = 3.7, p<0.05], and a lower mean than both the Effort group and the Negative group on Adventure Seeking [F (2, 74) = 6.0, p<0.01] and Verbal Trait Aggression [F (2, 74) = 5.7, p<0.01]. The Positive group and the Effort group had lower means than the Negative group on Trait Irritability [F (2, 74) = 4.4, p<0.05]. The Negative group scored higher than the Effort-group on IES-R Arousal [F (2, 75) = 4.1, p<0.05], and BSHS-A Nightmares [F (2, 74) = 5.2, p<0.01], and lower on BSHS-B Interpersonal Relationships [F (2, 73) = 3.5, p<0.05], which indicates more symptoms of stress and poorer family relations. The groups did not differ with regard to the HADS or pain, and no substantial differences were found for injury-specific or socio-demographic variables. When former patients with self-inflicted injuries were excluded, all but one difference disappeared (Positive < Effort and Negative on Verbal Trait Aggression, p<0.01). The patients who had self-inflicted injuries differed from the rest regarding TBSA [t (76) = 2.3, p<0.05], BSHS-B Body Image [t (76) = 3.4, p<0.01], Affect [t (76) = 2.7, p<0.05], and BSHS-A Nightmares [t (76) = 2.8, p<0.01], indicating a larger extent of burns and poorer health ratings. They did not differ with regard to the HADS or the IES-R.
31 Discussion
The principal aim of this thesis was to explore psychological risk and protective factors in adaptation after burn injury. Although the concept of coping was the focus of the investigation, a number of other factors were considered too; for instance personality, attention and memory processes, subjective life threat, dissociation, life events and injury- and socio- demographic factors. Overall, the most influential psychological factor was Avoidant coping. It was consistently shown to be a maladaptive strategy, both retrospectively and prospectively. Avoidance seemed to characterise a vulnerable subgroup of the burn patients, who also displayed more maladaptive personality traits and poorer health. On the whole, there was tentative support for a protective function of the coping strategies Emotional Support and Optimism/Problem solving, while the findings regarding Self- control were mixed.
A burn-specific coping instrument The CBQ was developed in paper I with the aim of creating a brief, burn- related coping instrument. It consisted of six coping factors of which four were related to poorer health ratings (Avoidance, Revaluation/Adjustment, Self-control and Instrumental Action) and two were associated with better- perceived health (Emotional Support and Optimism/Problem solving). Due to the retrospective approach, it is not possible to draw causal conclusions. Some of the behaviours may have contributed to the degree of difficulty, while others may be the consequence of having difficulties. Despite this limitation, the strategies will be referred to as maladaptive and adaptive on the basis of the results in paper I.
Maladaptive coping strategies The Avoidant factor in the CBQ consists of strategies that could lead to a devastated social life, substance abuse and passive rumination about problems and life changes. As stated in the introduction, avoidant coping is generally maladaptive in the long run (132), a finding that is supported in paper I. In a recent meta-analysis of coping and health outcomes, avoidance and wishful thinking were only related to psychological health (105),
32 whereas in paper I, Avoidant coping was related to both perceived psychological and physical health. Self-control indicates that there are negative emotions present, even though the individual tries to hold them back. In the CBQ, Self-control was negatively related to perceived psychosocial health, which is supported in previous studies of coping (50, 105). However, in the recent meta-analysis, self-control was positively related to physical health (105), an intriguing finding that was not supported by the results of paper I. It is important to recognise the ambiguity involved in interpreting coping behaviours without knowing the underlying reasoning of the individual. For example, there may be differences in the types of problems that the participants are thinking of and thereby the applicable strategies (129). Moreover, certain strategies might serve different purposes for different individuals or for different types of problems. For instance, seeking support may be a way of approaching a problem or a way of avoiding the task at hand. In addition, it may be of importance to identify the use of opposing strategies, i.e. ambivalent coping. Ambivalent coping in response to memories of the burn event and changes in appearance was recently found to be related to more symptoms of PTSD and Body image distress two months after discharge from hospital (43, 47). In the CBQ, Revaluation/Adjustment may reflect an ambivalent approach combining cognitive avoidance, distancing by turning to work and positive reappraisals. Both Revaluation/Adjustment and Instrumental Action may lead to, or signify, a preoccupation with symptoms, which can explain the moderately negative associations with perceived health.
Adaptive coping strategies In accordance with previous burn-related research (106), Emotional Support was related to better-perceived psychosocial health. The association between social support and health is often found to be complex, and in the recent meta-analysis no relation to health outcome was found when the stressor itself was health-related, uncontrollable or chronic (105). Optimism/Problem solving in the CBQ was weakly related to a better- perceived psychological health. The subscale consists of two elements: optimistic coping strategies and problem-solving strategies, each dealt with here. Optimistic strategies have previously been positively associated with psychological health; for instance in women with breast cancer diagnoses (127), and in men with HIV/AIDS (138). Further, trait optimism has been positively related to satisfaction with life in burn patients (53), and both psychological health (26, 127) and physical health (for a review see 117) in other patient samples. However, results regarding physical health are less consistent; for instance, trait optimism was not related to hearing problems in a sample of surgical patients with acoustic neuroma (8). Likewise,
33 problem-solving strategies are multifaceted. It has been concluded that problem solving is for the most part unrelated to health outcomes, but may be adaptive when the stressor is chronic (105). These complex relationships may explain the weak association with burn-specific health in paper I. In summary, most of the CBQ factors are readily interpretable and the associations with perceived health are largely supported in previous research on coping and on burn injured patients. The factor analytic approach requires a large sample in order to achieve a stable model. Although the present sample was large considering the low incidence of burns in Sweden, it would have been preferable to have even more participants in order to increase the stability of the model.
Personality traits in burn injured adults Recovered burn patients rated themselves as more tense, easily fatigued, less assertive and more inclined to display risk-taking behaviour. Although statistically significant, the mean differences were quite small. This may imply that most burn patients are within the range of normal scores and that a subgroup of vulnerable patients has deviant scores, mainly reflecting neurotic personality traits. The findings are supported by a previous study (46) and are not entirely unexpected considering the high premorbidity of psychiatric disorders that is generally seen in burn patients (102). In paper II, the deviations from the norm were smaller than in a previous study by Fauerbach et al. (46), where personality was measured upon discharge from the burn care. This may indicate that self-reported traits are unstable directly after a major trauma. Fluctuations in personality scores following changes in health have been reported before. Examples include a self-assessed increase in neuroticism after physical trauma (71), a decrease in neuroticism in patients recovering from major depressive disorder (63), and decreases in most of the KSP-subscales (signifying maladaptive traits) after psychopharmacological treatment for depression (39). Further, burn patients in the chronic phase (more than 10 months post-burn) have reported a significantly higher degree of alexithymia than patients in the early stages (less than four months post-burn) and non-burned controls (52). Alexithymia was significantly more pronounced in the burn patients who also met the criteria for PTSD. These reports suggest that self-ratings of maladaptive personality traits increase after trauma or during depression. Though in the long term, life events are reported to have only modest effects on personality ratings (30) and depression is reported to have no lasting effects (120). Therefore, potential state effects of the burn trauma should have faded considering the long time between injury and follow-up in paper II. However, since personality traits were measured after the burn injury, it is not possible to draw any firm conclusions regarding injury-related effects on
34 personality based on the results of paper II. The possibility of early state effects on personality ratings underscores the need for longitudinal studies in traumatised patients. The subscales in the SSP showed good internal consistency and the factor analysis of the subscales was largely equivalent to that in the normative sample (54). It is therefore concluded that the use of the SSP in burn patient samples is adequate.
Coping patterns, personality traits and health To explore the existence of subgroups in the recovered burn patient sample, the CBQ was cluster analysed (paper III). Three patterns of coping were found and they were differentially related to personality and health. This suggests that patterns of coping, rather than the use of single strategies, can be of importance in clinical settings. This statement was recently corroborated in a prospective, short-term study in burn patients (47). The three groups of copers were named Extensive, Adaptive and Avoidant. The Extensive copers took an intermediate position regarding health status and personality traits, while the Adaptive copers had the most favourable ratings of health status and personality traits. The Adaptive copers seemed to prefer Emotional support and Optimism/Problem solving, which may suggest that they are extroverted. Extroversion has previously been found to be a protective factor in the development of PTSD (46). In contrast, the Avoidant copers seemed to rely on Avoidance as their main coping choice, and the adaptive coping strategies were rated especially low. They reported the poorest health status and more maladaptive personality traits, and therefore seem to constitute a more vulnerable group of former burn patients. In addition to surgical follow-up, the rehabilitation approach should include psychological evaluations in order to identify psychological problems in this group of patients. A limitation of cluster analysis is that it always generates clusters, regardless of the properties of the data set. However, two analyses were carried out for the sake of comparison, and the agreement was good. In addition, the clinical validation of the coping subgroups confirms the existence of the coping clusters. The associations that were found between coping patterns and personality domains are largely supported in previous research. Strong associations have been found between avoidant coping such as escapist fantasy, withdrawal and wishful thinking, and the personality trait neuroticism (87). In the study by McCrae and Costa (87), the avoidant, or “neurotic”, strategies were also related to poorer psychological well-being and life satisfaction. However when controlling for personality scores, the associations became weaker. This suggests that coping may have a mediating role between trait influences and perceived health. Support for a
35 mediating role of coping has also been seen in a prospective evaluation of the associations between trait optimism, coping and distress (26).
Memory and attentional processes Memory and attentional processes were tested in order to investigate long-term cognitive effects of a burn trauma. There were no differences between the recovered burn patients and the control group in memory specificity on the Autobiographical Memory Test. Both burn patients and controls seemed to have used ineffective retrieval strategies, since they had specificity levels comparable to subjects with PTSD or depression (90, 163). It has been proposed that retrieval of specific memories can be impeded by a limited cognitive working capacity (163). Overgenerality in depressed individuals has been related to intrusive memories (17, 157) and avoidance of intrusive memories (70, 157). It may be that these processes consume the available cognitive resources and cause an interruption of the retrieval process. However in paper IV, self-reported symptoms of intrusion and avoidance were not related to specificity. This lack of association may be due to the low degree of symptoms that the participants reported and the findings may not be entirely comparable to research in the clinically distressed. Recent findings suggest that the specificity levels in paper IV are largely equivalent to those in traumatised but healthy individuals (157). It is therefore possible that the high level of reported life events in the control group could have contributed to decrease their specificity level. However, the underlying reasons for these memory deficits remain to be elucidated. The moderate burn-specific Stroop effect seen in the burn patients should be interpreted with caution, as there was no interaction between group (burn patients vs. controls) and word type (burn-related vs. neutral). In other words, there were no obvious differences in response patterns between burn injured and non-burned individuals. The weak effect may be due to poor power in the analyses, and it might have been stronger if a larger sample had been tested. Further, the extended time since injury might have contributed to normalising the former burn patients’ attentional processes, making the interference effect weaker. Potential attention and memory biases in those who have suffered a burn may be more evident early in recovery. In future testing of former patients, the use of a priming procedure, as is described in a previous study on subjects with PTSD (91), may be considered. In this context, priming would involve subjecting the participants to burn-related stimuli before testing. The reported effects of priming on Stroop interference (77) lead to a decision to invariably introduce the Stroop task before the
36 AMT. Otherwise, emotional states evoked by the AMT could have affected performance on the Stroop task. Although burn patients showed a moderate burn-specific Stroop effect while the controls did not, there were equal numbers of individuals in the two groups who displayed a Stroop effect. The reason for this is not known. Plausible interpretations are that some individuals in the control group were affected by their greater number of life events, or that burn and trauma stimuli have a certain effect on all of us. Fire and burns may be general threats that are deeply embedded in the minds of human beings. General trauma words have been seen to produce a Stroop effect in both controls and traumatised participants, although the effect was significantly greater in participants with severe PTSD (141). In contrast, the moderate Stroop effect seen in paper IV was not related to PTSD-symptoms or mood. It is possible that this association would be seen in a more distressed sample than that comprising the recovered burn patients. However, the emotional Stroop effect is not necessarily an indicator of psychopathology. For instance, it has been seen that positive words can also produce a Stroop effect in comparison with neutral words (104, 141), and that words related to a current concern may be sufficient to produce a Stroop effect in non-clinical groups (165). Further, healthy controls display a Stroop effect for words related to their area of expertise (e.g. bird names) (32). This suggests that the Stroop effect can indicate an attentional bias towards familiar words, which would support the theory of parallel processing that was briefly described in the introduction. Due to repeated activation, familiar words could be expected to have “stronger” pathways and interfere with colour naming. Considering the protracted effects of the burn, this might also apply to recovered burn patients. The recovered burn patients displayed longer response times than the controls in the AMT, longer latencies across all word types in the Stroop task, and poorer verbal fluency. A similar pattern was seen for AMT latencies in patients with insulin-dependent diabetes mellitus (75). This may signify a neuropsychological deficit, although the findings in paper IV need to be corroborated in a larger sample before conclusions can be drawn.
Prediction of psychological problems The prospective investigation in paper V showed that those burn patients who had used Avoidant strategies to cope with past life events had more symptoms of anxiety and depression three months after the burn. They also avoided reminders of the burn. As discussed above (paper I), Avoidance in the CTI/CBQ includes rumination and behaviours that lead to social isolation, and these features may explain the strong association to depressive symptoms. For instance, a
37 ruminative coping style has been related to symptoms of depression after a natural disaster (97). Otherwise, avoidance is more often connected to anxiety disorders such as PTSD. In paper V, only one of the PTSD-symptom scales was strongly predicted by avoidant coping. However, there is support for the negative impact of avoidant coping on psychological health in trauma patients in general (23), and after burn injury (19, 22, 110, 140). Self-control predicted less intrusive symptoms at three months, which indicates a positive effect of keeping feelings concerning threatening life events under control. An alternative interpretation may be that individuals who control their emotional output do not admit to the presence of psychological symptoms. However, the finding is indirectly supported in that opposing strategies, involving venting of emotions, have been strongly related to psychological maladjustment in chronically ill adults (48). In line with previous findings discussed above (paper I), there were indications of a protective role for the strategies Emotional Support and Optimism/Problem solving, although they did not remain in the final models. In accordance with earlier findings regarding burn patients (82) and other accident victims (67, 118), subjective life threat during the burn accident was predictive of PTSD-symptoms three months post-burn. Life threat may be an important factor for burn patients in particular, since they express more fear than other trauma groups (58). Altogether these findings lend support to the validity of the “subjective” diagnostic criterion (the fear reaction) of PTSD (24). Further, psychological symptoms during hospitalisation were predictive of remaining problems. Although previous studies have been inconsistent, Wiechman et al. (160) recently found high stability in depression scores over the first two years after burn injury, suggesting that initial problems can become persistent. No other variables emerged as predictors of psychological health with the exception of the finding that higher age contributed to the reporting of arousal symptoms. The low reporting of peritraumatic dissociation is in contrast to previous studies showing that 80 % of burn patients (136) and 44 % of emergency room personnel (72) have such experiences. Previous studies have used a questionnaire format, and it is possible that the interview format used in paper V is more restrictive. In a previous study of psychopathology three months after a burn injury, Tedstone et al. (140) measured coping with burn-related problems at two weeks post-burn. With the exception of Acceptance, they did not find different coping strategies to be associated with psychological health in different ways, and early assessment of coping therefore did not seem very useful. However, the results in paper V suggest that it may be more advantageous to assess general coping styles when aiming to predict later psychological health. This supports the assertion in the introduction, that habitual coping strategies have more impact on health (50).
38 One hypothetical reason for the advantage of assessing coping styles could be that coping with the extraordinary adversities during hospitalisation has no long-lasting effect on health, given that the patient’s life situation has changed drastically upon follow-up. The change in life situation may also be a reason for the increase in PTSD-symptoms from baseline to three months post-burn that was seen in paper V. It is possible that the specific reminders of the burn event (not the injury) were not available until after discharge. This is a proposed explanation for delayed PTSD in traumatised individuals who begin their recovery when in hospital (38). The main methodological limitation in paper V is the small sample of burn patients, which reduces the power of the analyses. The results should therefore be replicated in a larger sample. In addition, a follow-up after three months is rather early, considering the persistent impact that a burn injury can have on a person’s perceived health during the first year after the burn event (31). However, there is a clinical relevance as most patients are in frequent contact with a burn or surgery clinic at this time point. This facilitates screening for and early detection of psychological problems.
The coping instrument The CBQ shows promise for use in assessing coping after burn injury (paper I). In addition, the adapted form, CTI, which measures general coping style in an interview format (paper V), was shown to have good predictive qualities. Both versions related in intelligible ways to health assessments (papers I, III and V), and the CBQ was also associated with personality traits in a logical way (paper III). A conclusion that may be drawn from paper V is that the CBQ is readily adaptable to general assessment of coping with threatening life events, and its use could most likely be extended beyond the group of burn patients.
Personality traits, health and acceptance of a trauma- focused survey The results of paper VI suggest that a trauma-related postal questionnaire is well accepted by the majority of former burn patients. This finding is supported in community studies of mental health and in the elderly (61, 167). There were three groups of participant reactions identified: 1) Positive, 2) Effort/time consuming, and 3) Negative. Burn severity and socio- demographic variables did not differ among the three groups. However, in accordance with earlier research, negative reactions were related to maladaptive personality traits (66). In addition, negative reactions were
39 associated with poorer family relations, more nightmares and arousal symptoms. The association between negative reactions and symptoms of stress is supported in previous studies, where participants with more PTSD- symptoms have expressed more distress after participation in a study (96, 101). According to these reports, few regretted taking part and the use of health care did not increase afterwards, suggesting that the distress reactions were short-lived. The patients who had self-inflicted injuries were not more likely to respond negatively to the survey than other participants in paper VI. However when excluding them, most group differences disappeared. Therefore, the patients with self-inflicted injuries who reacted negatively seem to be a vulnerable group. On the basis of this study, the questionnaire format seems adequate for use in the group of former burn patients. Though only four individuals expressed concerns about intrusion, greater efforts can be made to ensure the participants of confidentiality. A limitation of paper VI is that only one question was used to elicit reactions to the survey. Although a more elaborate investigation of the reactions would be preferable, it was deemed that including more detailed questions might result in a lower response rate.
General methodological considerations In light of the high response rates, the three separate samples in this thesis can be considered representative of burn patients in Sweden. In papers I and III, the health assessment was carried out before the assessment of coping and personality. The design is not problematic regarding the personality data, assuming that personality in adulthood is relatively stable and mostly unaffected by life events in the long run (30, 55). However, the retrospective assessment of coping is a limitation of papers I and III, as the ratings might have been influenced by selective memory processes. Research shows that people can have difficulty remembering actual coping behaviours and thoughts (121). Although one could suppose that the time after discharge from burn care is a period with salient and easily remembered characteristics, it cannot be concluded that the retrospective coping assessment in papers I and III reflects the actual coping use. The responses most likely signifies representations in memory of how coping was used. It is possible that the assessment reflects the person’s usual coping style, and thereby dispositional aspects, or else how the person prefers to remember his/her past coping efforts. There was a lack of control for psychiatric morbidity in studies I–V, and for substance abuse in studies I–IV. In paper VI, the data were based on medical records in the Burn Unit, which may have been incomplete regarding these issues.
40 In this early phase of identifying burn-related psychological risk and protective factors, it proved rewarding to combine coping, personality and situational variables (e.g. TBSA) in accordance with the recommendations of the third approach in coping research. However, the intricate associations between personality, coping and outcome remain to be corroborated in prospective studies.
General discussion The results in the present thesis lend support to the hypothesis that subgroups of individuals react differently after traumatic events as a result of individual factors. Different reactions may also indicate a need for different types of management. The lack of beneficial effects of psychological debriefing in randomly selected individuals after burn trauma (12) and in general (148) may be a result of not taking such factors into consideration. The present findings suggest that rehabilitation resources may be put to optimal use by early screening for avoidant coping, subjective life threat and psychological symptoms.
Current status of psychological support and aftercare for burn injured patients According to a European survey, in half of the responding burn units less than 20 % of the patients receive psychological counselling (150). In a British study, only 6 % had contact with a psychologist or psychiatrist after discharge, and 63 % had wanted more emotional support (166). It was further described that the greatest source of support came from nurses during hospitalisation and from the family post-discharge. The value of support from nurses and family members should not be underestimated, however some patients felt that they were a burden to the staff and the family. In addition, the identification of patients who were in psychological distress, as judged by the medical staff, showed poor specificity and sensitivity (166). In the Netherlands, 25 % of the burn patients who receive aftercare are dissatisfied and patients with psychological problems ask for multidisciplinary follow-ups in burn-specific outpatient clinics (149). In the European survey it was also seen that more early psychological assessment and treatment was associated with more reports of referrals and aftercare support (150). Considering the current low availability of psychological resources in somatic health care, an important first goal should be to develop a brief screening tool that the medical staff could use without extensive training. To attain this goal, reliable predictors of post-burn distress must be identified. Hopefully, this thesis has contributed to that
41 work. However, bearing in mind the high prevalence rates of post-discharge PTSD (22, 37, 106) and depression (160) seen in international studies, there is also a need for long-term follow-up of psychological problems. One practical obstacle in clinical work is the geographical spread of the patients. Therefore, as suggested by the results in paper VI, screening for long-term psychological problems may well be conducted by postal questionnaires. As of today, there is no national standard for clinical follow-up of burn patients in Sweden, and there are no Swedish data on patient satisfaction with aftercare. As a result of the project involving the present thesis, a trial is underway at the Burn Unit at Uppsala University Hospital involving clinical multidisciplinary one-year follow-up visits. The visits comprise surgical, nursing, occupational therapy, physical therapy, psychological, and psychiatric assessments. The aims are to identify health problems, and to formulate a rehabilitation plan for each individual.
Future directions Considering the maladaptive influence of avoidant coping on psychological health, a specific aim in psychological interventions could be for the patient to develop more adaptive strategies. Theoretically, it is believed that avoidant behaviour maintains PTSD-symptoms, and that resolution requires modifications of trauma-related beliefs and trauma memory elaboration (38). Whether screening for cognitive distortions is useful in planning psychological interventions for burn patients remains to be explored. There is tentative support for the clinical use of the Stroop task, such as in detecting intrusive cognitions in traumatised patients (89) and in distinguishing depression from dementia in the elderly (33). The Stroop task can also be used in studying the effects of treatment. In patients with anxiety disorders, the interference effect for colour naming of anxiety-related words decreased after psychological treatment (84, 153). One conceivable psychological intervention is “written emotional expression”, a technique that has been found to improve reported physical health as well as psychological health and functioning (122). Structured writing about stressful experiences is proposed to contribute to cognitive restructuring, memory accessibility and coherence (for a review see 40). The effects of this intervention are dependent on the level of avoidance that an individual displays. Individuals with high avoidance have been found to have a poorer outcome when asked to express their inner feelings and a better outcome when asked to express positive things (126). The intervention can therefore be tailored to fit a particular individual. In light of the burn patients’ cognitive performance, a future area for investigation is neuropsychological function. Severe traumas have been related to atrophy in hippocampal structures of the brain. The changes seem to appear in individuals who are depressed or who suffer from PTSD, and
42 may be reversible in those who are moderately affected (for a review see 88). These findings are relevant, since the hippocampus complex is proposed to play a central part in the storage and retrieval of episodic memories (158). The results in paper IV suggest that trauma-related neuropsychological deficits should be explored on a broad basis, not only in individuals with manifest PTSD-symptoms. Some support for this approach is found in a study of victimised women, where subtle neuropsychological deficits were seen both in women with and without PTSD (128). In addition, maladaptive personality traits such as neuroticism deserve further study in longitudinal research on trauma victims. Neuroticism can be seen as a marker of psychological vulnerability, and seems to predispose the individual to depression (120) and PTSD beyond the effects of trauma exposure (for a review see 100). Also, neuroticism has been associated with perceived physical symptoms (92). A related future research area involves the proposed association between psychological factors and biological markers of psychological vulnerability. For instance, neuroticism was recently associated with a lower physiological stress response, suggesting a down-regulated hypothalamic-pituitary-adrenal axis. This was interpreted as a protection against harmful over-activation in neurotic individuals who display a pronounced affective reactivity to every- day stressors (86). Moreover, chronic stress and depression have been associated with a poor performance of the immune system, indicating that psychological factors exert a negative influence on physical health (for reviews see 88, 99). Further, psychological interventions promoting constructive coping with traumatic events such as written emotional expression have been associated with an improved function of the immune system (see 40). This indicates that screening for psychopathology and implementation of psychological interventions may be of great value to patients who have suffered a physical trauma.
The main findings in this thesis; i.e. the proposed maladaptive impact of Avoidant coping, Neuroticism, life threat and early psychological symptoms, should be further studied in long-term follow-ups, and in conjunction with other markers/causes of stress. There is also a need for a closer investigation of possible protective psychological factors, such as coping by Self-control, Emotional Support, Optimism/Problem solving, or trait optimism, and extroversion. An especially interesting issue is the proposed role of coping as a mediator between personality traits and perceived health. In addition, further exploration of cognitive deficits and attentional bias is warranted. An understanding of the psychological mechanisms behind distress in physically injured patients would not only help in the identification of patients at risk for psychological problems but also in the planning of individual rehabilitation and psychological treatment.
43 Conclusions
Adaptation after burn injury is influenced by a number of factors, many of them psychological. The results suggest that
• The Coping with Burns Questionnaire measures six forms of coping in the aftermath of a burn injury. It has acceptable psychometric properties and the six coping strategies were intelligibly associated with perceived health (paper I). • Former burn patients display more maladaptive personality traits in comparison with a normative sample (paper II). • An Avoidant coping pattern is associated with more maladaptive personality traits, especially Neuroticism, and poorer perceived health (paper III). • Recovered burn patients have a moderate attentional bias toward burn-related stimuli, but do not deviate in memory processes. However, there are indications of general cognitive deficits in recovered patients (paper IV). • Avoidant coping, subjective life threat during the burn trauma and onset of psychological symptoms during hospitalisation are risk factors for poorer psychological health at three months post-burn, while coping by Self-control is a protective factor (paper V). • The majority of former burn patients accept trauma-related postal questionnaires and may find participation beneficial (paper VI).
44 Acknowledgements
This thesis is the result of a collaboration between the Department (Dept.) of Neuroscience, Psychiatry, Uppsala University Hospital, the Dept. of Psychology, and the Dept. of Surgical Sciences, Plastic Surgery, all at Uppsala University, and the Burn Unit at Uppsala University Hospital. The investigation was completed with the support of many people. In particular, I wish to express my sincere gratitude to:
Lisa Ekselius, Ass. Professor, Dept. of Neuroscience, and my chief supervisor. For excellent supervision, providing invaluable advice and opportunities for teaching. For generously sharing scientific knowledge, clinical experiences and your personal warmth.
Gerhard Andersson, Ass. Professor, Dept. of Psychology, and my supervisor. For introducing me to the Burn research group when supervising my project for an M.Sc. in Psychology. For contributing with exciting ideas regarding study design, and for scientific and statistical guidance.
Bengt Gerdin, Professor, Dept. of Surgical Sciences, and my supervisor. For enthusiastic and constructive support in all parts of the scientific process, and for encouraging me to present the findings at a number of national and international meetings.
Lars von Knorring, Professor, Dept. of Neuroscience. For providing many of the practical prerequisites for my work, and for inspiring support in the process of making this thesis.
Morten Kildal, Plastic Surgeon, fellow Ph.D. student. For generously sharing scientific and clinical knowledge, for co-authoring, and for optimistic and inspiring teamwork.
Kurt Lannerstam, Registered Nurse, Spec. in Burn Care. For assistance with data collection, and for initial discussions regarding burn care.
Johan Dyster-Aas, Psychiatrist and fellow Ph.D. student. For collaboration in data collection and study design, for valuable clinical input, and for sharing many laughs in the serious process of making science.
45 Björn Wikehult, Registered Nurse, Spec. in Burn Care. For assistance with data collection, for co-authoring, and for many inspiring discussions.
Aili Low, Plastic Surgeon and fellow Ph.D. student. For sharing clinical knowledge and for valuable input in study design.
Lena Bohlin, Susanne Blom, and Åsa Billing-Lindgren, for invaluable secretarial support and for good comradeship.
All staff in the Burn Unit, for being generous with your time, answering all kinds of questions that I have had. For maintaining humour and warmth in the clinical work, and for good comradeship.
Mia Ramklint, Ph.D., Dept. of Neuroscience. For inspiring scientific discussions, and for providing me with opportunities for teaching.
Anders Hedlund, Annika Svensson, Tomas Moberg, and Hans Arinell, For efficient help and support with computer problems.
Jane Wigertz, for swift, thorough and skilful linguistic revision.
Fredrika Norlund and Maria Ingelsson-Sgroi, former students in psychology. For great collaboration and for co-authoring.
Anders Egeryd, my fiancé. For around-the-clock IT-support and for generously supporting me through periods of hard work. For love and encouragement.
Ingegerd Willebrand, my mother, and Jan-Eric Martinson, my stepfather. For always believing in my ability.
Gunilla, Sofia, Krister, Linnéa and Anton Egeryd, my ”in-laws”. For generosity and warmth.
Finally, I wish to thank all participating burn patients and former burn patients for your time and effort.
The investigation was supported by the Swedish Board of Health and Welfare, the Swedish Medical Research Council (grants no. 9523, 12260, 13245, 14020), the Höök Foundation, the Nasvell Foundation, the Söderström-Königska Foundation, the Thuring Foundation, and the Vårdal Foundation.
46 References
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