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Education for men with solvent-induced chronic toxic encephalopathy and their spouses
Patient Education and Counseling 58 (2005) 88–95 www.elsevier.com/locate/pateducou
Education for men with solvent-induced chronic toxic encephalopathy and their spouses ˚ bjo¨rnsson*, Bjo¨rn A ˚ . Karlson, Palle H. Ørbæk Gunnel L. A Department of Occupational and Environmental Medicine, Section of Behavioral Medicine, Lund University Hospital, S-22185 Lund, Sweden Received 4 November 2003; received in revised form 1 July 2004; accepted 9 July 2004
Abstract In this study an education, and a series of group sessions for patients with solvent-induced chronic toxic encephalopathy (TE) and their spouses are evaluated. Thirty-eight patients and 21 family members participated in a 1-day education scheduled with short lectures on the clinical examination of chronic toxic encephalopathy and the prognosis. A specialist in occupational medicine, a psychologist and a social worker gave the lectures. Small discussion groups were also arranged. Of the participants from the educational days, 16 TE patients and 14 wives attended a 10-week counselling and coping improvement program with separate group sessions once a week, for patients and spouses. Questionnaires were used to assess symptoms, social network, mastery and family climate, and the participants’ satisfaction with the education and the group sessions. The majority of the participants experienced the 1-day information as useful and relevant. The 10-week group sessions were rated as meaningful and the design, number, duration and frequency of the sessions equally good. Self-reported symptoms, social network and mastery were measured before the group sessions, and 3 and 9 months after breaking up the group sessions. In most measurements, there were no statistically significant differences between the three points in time. However, the wives improved more than did the patients but the effect was not lasting the whole follow-up period. Considering the patients’ dependence on their wives, it might be most important that the wives experienced some relief from their own symptoms. # 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Chronic toxic encephalopathy; Patient education; Group sessions
1. Introduction Solvent-induced chronic toxic encephalopathy (TE) is a brain disorder with slow development and only little restitution after cession of exposure. During the last 20 years, there has been awareness and understanding of the adverse health effect of exposure to solvents. From the beginning of the 1970s several studies from the Scandinavian countries observed that solvent-exposed workers had more neuropsychiatric symptoms and performed poorer results in neuropsychological tests in comparison with unexposed persons [1–4]. Later studies have confirmed these findings [5]. * Corresponding author. Tel.: +46 46 17 72 95; fax: +46 46 17 72 85. ˚ bjo¨rnsson). E-mail address: [email protected] (G.L. A
The clinical picture is often characterized by vague and non-specific symptoms such as fatigue, memory dysfunction, concentration problems, a depressed state of mind, irritability, headache, affect lability, sleep disturbances and lack of self-confidence [6,7]. In a recent study, Morrow et al. [8] found no differences between exposed and non-exposed subjects on measures of general intelligence. Owing to the slow development of the disorder, both the patients and their families are often very concerned about what is actually going on and the growing emotional instability influences both family members and their social relations. The wives often have to take an increased responsibility concerning both practical issues and social contacts [9]. Although there is substantial knowledge about the possible negative psychological consequences of being long-term exposed
0738-3991/$ – see front matter # 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.07.006
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to solvents, so far little has been done to ease the situation for the patient and his family. Without knowledge about the consequences of a mild brain disorder, it is not easy to cope with the situation neither for the patients nor for the families. The most appreciated feature in a previous intervention study for TE-patients and their spouses was sharing experiences with others in the same situation, and the participation of the spouses made it easier to talk about the consequences of the disorder in their families [9]. The spouses expressed great appreciation for having received information about TE and its prognosis. A follow-up of this study after 7 years showed improved social functioning and reduced distress in the treated TE patients, although they were not better off than a group of untreated TE-patients only examined with the same self-report measures at this point in time [10]. A study using crisis intervention and cognitive training in a group of TE-patients found improvement in selfconfidence, affect control, and memory [11]. In another study TE-patients showed improved coping skills and reduced emotional strain after an intervention in which the family participated in group sessions, cognitive training and if needed, family therapy [12]. In yet another study, eight TE subjects participated for 8 weeks in body-mind training and relaxation resulting in improved ability for physical and mental relaxation during the training period [13]. No longterm follow-up has been reported from any of these studies. For other chronic diseases, education and information have been directed to both patients and spouses with different applications, e.g. coping training and behavior modification [14–16]. An evaluation of 102 different interventions programmes for a wide range of patient categories showed patient education to be the most commonly implemented types of programmes [17]. In contrast to our previous main focus on neuropsychological training of the TE-patients [18], the present study focused on education and to share experiences about how other couples cope with the disease. This education and intervention for TE-patients and their wives was supposed to be beneficial, and facilitate to cope with a changed life situation. The specific aim was to examine whether the opportunity to communicate with others in a similar situation and to receive information on the medical, psychological, and social effects of TE could reduce the psychological distress of TE-patients and their spouses and increase the well-being of the families.
2. Material and methods 2.1. Procedure 2.1.1. One day of information An informational and educational venture for TE-patients and their spouses was given in four different places in the southern part of Sweden, 1995–1996. Each occasion lasted for 1 day and was scheduled with short lectures on how the
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clinical examination of chronic toxic encephalopathy is carried out, and on the prognosis. The participants were informed about the psychological and social consequences of solvent-induced chronic toxic encephalopathy. They were also informed about the criteria of the Swedish National Social Insurance Office for approval of TE as an occupational disease. A specialist in occupational medicine, a psychologist and a social worker gave the lectures. To give the participants an opportunity to share experiences, small discussion groups were arranged. These groups were made up of patients and spouses separately as well as mixed depending on the topic. At these ventures, the TE-patients and their wives/ spouses (WTE) were invited to participate in group sessions planned to take place once a week for a 10-week period, for patients and spouses separately. 2.1.2. Information on group sessions Those who chose to participate in the group sessions were subsequently informed about the purpose of the sessions and interviewed by the psychologist and the social worker who were going to be group leaders. The psychologist carried out interviews with the patients and the social worker with the wives. The main objective of interviewing the patients was to evaluate whether they were able to participate in group sessions with respect to their psychological condition. The objective of the interview with the wives was to gain information about their expectations and needs. Those, who after the interviews were still interested in participating received further information about the planned evaluation occasions and were asked to give their consent. 2.2. Subjects In the regional educational programme, 38 TE patients and 21 members of their families participated. These patients and family members had not participated in our previous rehabilitation programmes [9,18]. Sixteen TE patients and fifteen of their wives agreed to participate in the 10 weeks of group sessions. One of the TE-patients came only once because he developed a major depressive episode and two of the TE-patients participated only twice. One wife did not want to participate at all, two agreed but did not turn up at all, and one wife became ill and participated only once. The patients had been exposed to organic solvents for periods ranging from 12 to 40 years (the median time of exposure was 25 years) and had been diagnosed at the departments of Occupational Medicine in Malmo¨ or Lund 0–9 years previously (median 2.5, mean 3.1 years). They had worked as painters or spray painters (n = 9), printers (n = 4), car cleaner (n = 1), process operator (n = 1) and shoemaker (n = 1). Seven were still employed, five were on sick leave and four had disability pensions. The TE-patients were aged 44–63 years (median 55) and their wives 44–69 years (median 54). All but one of the wives was in gainful employment.
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Power estimates indicated the used number of subjects to be sufficient for within-subject comparison. 2.3. The group sessions At the start of the group sessions, 16 TE-patients and 13 of the wives attended. They were divided into four groups, the patients and their wives into separate groups. One psychologist conducted the groups of patients and one social worker the groups of spouses once a week for 10 weeks. Each session was limited to 90 min, but with a break for 15 min after 40 min. We had 4–8 participants in each group. The group sessions took place at two locations to reduce the participants’ travelling. The overall aim of the group sessions was to increase the participants’ knowledge about solvent-induced chronic encephalopathy and to increase their ability to cope with the altered situation for both TE and WTE. The rationale was that being short of knowledge about the disability may be a risk for the development of more isolation and problems in the family. Various emotional reactions may be misinterpreted as direct consequences of the brain disorder and thus interfere with adequate coping, or even worse, cause the patients to be reluctant to accept relevant psychiatric treatment. At the first meeting confidentiality rules were agreed upon. The themes in the patient and in the spouse groups had in part different objectives. The patient groups were focused on establishing new strategies to cope with problems common for TE-patients, e.g. concentration difficulties, aggressiveness and social withdrawal. A central part was to coach social interaction by giving feedback and redefining troubles as mere trifles possible to cope with. In the WTE-group, one objective was to make participants aware of ways to avoid the disease taking control of family life and activities. Another goal was to provide alternative solutions to problems emerging from coping with the trivialities of everyday life. 2.4. Evaluation methods 2.4.1. Information and education programme The information and education programme was evaluated at the end of the day by a questionnaire measuring the subjects’ opinions on the number and length of the lessons and small group discussions, the size of the groups, the relevance of the small group discussions, and how they experienced talking to others about their problems. The relevance of the lectures was rated on a four-point scale (very relevant, relevant, somewhat relevant and not at all). 2.4.2. The group sessions The 10 weeks of group sessions were evaluated by questionnaires (see Table 1). On completion, the 10 group sessions were evaluated by traditional evaluation questions. The participants were asked about their opinion of the
Table 1 Schedule for evaluation methods Before the group sessions
After the group sessions
After 3 months
After 9 months
GHQ-30 SCL-90 SOC Mastery ISSI Family Climate
Evaluation questionnaire
GHQ-30 SCL-90 SOC Mastery ISSI
GHQ-30 SCL-90 SOC Mastery ISSI Family Climate
GHQ: general health questionnaire; SCL: symptom checklist; SOC: sense of coherence; ISSI: interview schedule for social interaction.
appropriateness of number, length, and the dispersion of the sessions, and of the group size, as well as how they experienced listening to and telling the other group members about problems related to TE. The latter two questions were rated on a four-point scale (with labels ranging from hard to not hard at all). They were also asked if they had noticed changes concerning mood, somatic complaints or isolation by ratings on a five-point scale (clear improvement, some improvement, neither improvement nor impairment, some impairment, and clear impairment). The effects of the group sessions were further evaluated by a set of structured and well validated and internationally used questionnaires on coping and well-being administered once before the start of the group sessions, and 3 and 9 months after the completion of the intervention. These types of questionnaires have previously been used in our studies of TE-patients [10]. 2.4.3. Questionnaires 2.4.3.1. Symptom checklist-90. The symptom checklist-90 (SCL-90) measures the respondent’s psychosomatic and emotional distress during the last week [20]. The inventory comprises 90 items covering nine primary symptom scales. Respondents are asked to indicate to what extent they have been bothered by each symptom during the last week, on a 5point Likert scale (scored 0–4) with the points ‘not at all’, ‘a little bit’, ‘moderately’, ‘quite a bit’, and ‘extremely’. The global severity index (GSI) is calculated as the average score of all 90 items and represents the overall level of distress. 2.4.3.2. General health questionnaire. The 30-item version of the general health questionnaire (GHQ) aims at measuring deterioration in the subject’s well-being during the last few weeks compared to the respondent’s habitual state [21]. All items are rated on a four-point Likert scale labeled with response alternatives ‘not at all’, ‘not more than usual’, ‘somewhat more than usual’ and ‘much more than usual’. In the present study, only a global measure comprising the average of all 30 items was used. 2.4.3.3. Sense of coherence. The sense of coherence (SOC) questionnaire is supposed to evaluate the availability and willingness to use adaptive coping resources scored in three
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dimensions: comprehensibility, manageability and meaningfulness. The comprehensibility dimension stands for the sense of confidence that the stimuli deriving from one’s internal and external environments are structured, predictable and explicable. The manageability dimension refers to a sense of having available resources to encounter demands posed by the environmental stimuli. The third dimension, meaningfulness measures to which degree these demands are challenges well worthy of the subject’s investment and engagement. SOC is measured on a 29-item, 7-point scale [22]. The respondent is asked to indicate a number, from 1 to 7, with the endpoints wording: ‘very often’ or ‘very seldom or never’. Scale scores are computed as the average of the item scores. The higher the score, the stronger the SOC. 2.4.3.4. Mastery. The mastery scale comprises statements about the sense of being in control of the demands and problems in daily life. The inventory contains seven items where the subjects are asked to rate themselves on a fourpoint scale with the wording; ‘applies completely’, ‘applies fairly well’, ‘does not apply particularly well’, and ‘does not apply at all’ [23]. Scale score is computed as the average of the item scores, with a higher score indicating a greater sense of mastery. 2.4.3.5. Social interaction. Interview schedule for social interaction (ISSI) is a self-report questionnaire designed for assessing both quantity and quality of social support and interaction [24, p. 124]. The questionnaire measures the respondent’s availability of and satisfaction with close affective relationships and also the relationship with friends, work-mates and acquaintances. In this study a shortened form, comprising 33 items, developed in Sweden was used [25]. Two scales measure access to deep emotional contacts ‘availability of attachment’ (AVAT) and the subject’s satisfaction with these contacts ‘adequacy of attachment’ (ADAT). Another two scales measure access to social contacts ‘availability of social integration’ (AVSI) and satisfaction with these contacts ‘adequacy of social integration’ (ADSI). Scale scores are computed as the average of the item scores. 2.4.3.6. Family climate. The family climate is a Swedish self-rating scale comprising 85 adjectives selected to describe different aspects of emotional atmosphere in the family [26]. Through factor analyses four different aspects of family climate have been identified. Closeness (e.g. harmony, warmth, and security; 28 words), distance (e.g. coolness, rejection, and negative feelings, 11 words), expressiveness (e.g. open and direct expression of feelings, 6 words) and chaos (e.g. confusion, nervousness, and instability, 6 words). The subject marks which of the adjectives that best characterize his or her family. An index is then calculated for each factor. A factor score of 1 indicates that the same proportion of words has been marked on a particular factor as on the total scale.
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2.5. Statistical analysis P-values below 0.05 were considered statistically significant. Due to unsystematic loss of data, the general linear mixed models module in SPSS 11.5 was used to estimate over all treatment effects and treatment effects at separate assessment points (SPSS, Inc., 1998). A repeated measures model was specified and an iterative model fitting strategy was adopted. For all analyses, an ante-dependence first-order and a compound symmetry covariance structure was tested. The ante-dependence first-order structure provided in all cases a better fit, so it was generally applied. Models were solved using the restricted maximum likelihood (REML) method. Statistical inference for the mean structure of data was made with fixed effects models and approximate Type III F-tests and, approximated t-tests, including an overall intercept. To assess the consistency between the couples ratings in the family climate scale, the intraclass correlation coefficients were used.
3. Results The evaluation of the 1-day information and education showed that the lessons were experienced as meaningful and that the majority of both patients and spouses obtained new knowledge. The number of lessons and the duration were considered to be appropriate by the patients (92 and 87%, for the two aspects, respectively) as well as by the spouses (90% for both aspects). Ninety-seven percent of the patients and ninety-one percent of the spouses rated the group discussions as relevant or very relevant. The evaluation of the 10-week group sessions showed that a majority of the participants, both patients and spouses, appreciated the design of the sessions with respect to the number of them (TE 73% and WTE 77%), duration of each session (TE 87% and WTE 92%), and their frequency (TE 73% and WTE 85%). Concerning changed mood, clear improvement was reported from 7% of TE and 23% of WTE and some improvement was reported from 40% of the TE and 8% of WTE. Somatic complaints did not change among the TE-patients while 23% of the WTE reported some improvement. Both TE (33%) and WTE (31%) stated improvement concerning social isolation. None of the participants reported impairment concerning mood, somatic complaints or social isolation. However, 33% of the patients and 23% of the spouses found the group sizes too small. Almost all the participants reported the sharing of experiences in groups as meaningful, and most of them did not find it difficult to talk about their own problems nor to listen to those of others. To analyse the questionnaire outcome from the 10-week group sessions, a repeated measurement design was used. For the TE-patients the analysis showed statistically significant main effects over the three measurements in one variable of the SCL-90 scale were shown (Table 2A).
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Table 2 Symptoms of psychological distress (SCL-90) and general health questionnaire (GHQ) before intervention and changes 3 and 9 months after participation in the intervention program Mean (95% CI) before intervention
Deviation mean (95% CI) 3 months after intervention
9 months after intervention
Repeated measurement P
(A) TE-cases SCL-90 Somatization Anxiety Depression Interpersonal sensitivity Obsession-compulsion Hostility Phobic anxiety Paranoid ideation Psychoticism GSI GHQ
1.46 1.47 1.65 1.12 2.27 1.14 1.14 0.82 0.67 1.37 2.56
1.87) 1.84) 1.98) 1.37) 2.70) 1.47) 1.57) 1.10) 0.95) 1.63) 2.98)
0.19 0.37 0.46 0.18 0.41 0.05 0.18 0.07 0.15 0.24 0.10
( ( ( ( ( ( ( ( ( ( (
0.51; 0.93; 0.88; 0.75; 0.85; 0.69; 0.68; 0.48; 0.62; 0.61; 0.36;
0.12) 0.20) 0.04) 0.39) 0.04) 0.58) 0.32) 0.62) 0.32) 0.13) 0.16)
0.05 0.15 0.13 0.01 0.02 0.06 0.04 0.20 0.15 0.04 0.20
( ( ( ( ( ( ( ( ( ( (
0.52; 0.70; 0.56; 0.53; 0.38; 0.29; 0.55; 0.39; 0.57; 0.39; 0.52;
0.43) 0.40) 0.30) 0.50) 0.41) 0.42) 0.46) 0.80) 0.27) 0.32) 0.12)
0.369 0.247 0.050 0.631 0.075 0.728 0.571 0.656 0.758 0.196 0.444
(B) Wives of TE cases Somatization Anxiety Depression Interpersonal sensitivity Obsession-compulsion Hostility Phobic anxiety Paranoid ideation Psychoticism GSI GHQ
0.77 (0.44; 1.11) 0.61 (0.31; 0.91) 0.85 (0.57; 1.12) 0.62 (0.40; 0.85) 0.82 (0.59; 1.05) 0.27 (0.12; 0.43) 0.31 (0.13; 0.48) 0.50 (0.27; 0.73) 0.21 (0.09; 0.33) 0.61(0.42; 0.79) 2.10 (1.85; 2.35)
0.24 0.21 0.08 0.28 0.33 0.02 0.06 0.07 0.04 0.15 0.06
( ( ( ( ( ( ( ( ( ( (
0.55; 0.46; 0.38; 0.53; 0.65; 0.15; 0.22; 0.31; 0.21; 0.34; 0.17;
0.06) 0.03) 0.22) 0.03) 0.00) 0.10) 0.10) 0.16) 0.12) 0.03) 0.29)
0.18 0.09 0.01 0.13 0.19 0.21 0.02 0.02 0.03 0.01 0.03
( ( ( ( ( ( ( ( ( ( (
0.53; 0.18) 0.37; 0.55) 0.38; 0.35) 0.46; 0.20) 0.56; 0.18) 0.15;0.57) 0.18; 0.22) 0.32; 0.28) 0.20; 0.25) 0.26; 0.29) 0.31; 0.25)
0.170 0.044 0.789 0.027 0.099 0.239 0.013 0.709 0.313 0.012 0.667
(1.05; (1.09; (1.32; (0.88; (1.85; (0.80; (0.71; (0.54; (0.39; (1.11; (2.13;
Their wives showed statistically significant effects in three variables of the SCL-90 scale (Table 2B). On the SOC, ISSI, mastery, GHQ, and family climate scale, there were no statistically significant differences between the three points of time, neither for the patients nor their wives (Table 3A and B). Comparing the ratings on the family climate scales within the couples showed that the patients and their wives rated their family function almost identically, showing interclass correlation 0.8. However, as expected, the patients displayed a significantly higher symptoms load than their wives before as well as after the intervention in most of the SCL-90 scales. At the first measurement, the wives scored statistically significantly higher on the SOC scale than did TE-patients in the total as well as in the subscales meaningfulness, and manageability (P = 0.001). On the two next occasions of measurement, there were no differences in any of the SOC scales between the groups. On the scales of GHQ, mastery, family climate and ISSI there were no differences between TE and WTE on any of the occasions.
4. Discussion and conclusion The focus in the present study was if the opportunity to communicate with people in the same situation and gaining
increased knowledge about medical, psychological and social effects of chronic toxic encephalopathy could reduce the psychological distress and increase the coping ability of the TE-patients and their spouses. The high appreciation of the 1-day meeting indicated this to be a suitable educational design for TE-patients and their spouses. The group sessions were a short-term intervention and most participants were pleased with the design of the sessions. However, some of the subjects would have preferred the groups to have been somewhat larger. In conclusion, both the educational 1-day programme and the group sessions were evaluated as meaningful and relevant by both patients and wives, and indicated to be a suitable design. Only small improvements were, however, seen in symptom load over time, although the wives improved more than did the patients. 4.1. Discussion During our more than 20-year long clinical experience of TE-patients and spouses, we have observed that TEpersons often miss the opportunity to share experiences with other TE-patients. In the present study, this notion was supported in the evaluations of the patients as well as of their spouses. Similar observations have been noted in a formal interview study of TE-patients and their spouses (unpublished data). Both TE and WTE have to adjust to new routines due to the disease. To support them in this process may counteract
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Table 3 Sense of coherence (SOC), mastery, social interaction scores (ISSI) and family climate scale before intervention, and changes 3 and 9 months after participation in the intervention program Mean (95% CI) before intervention (A) TE-cases SOC, total Comprehensibility Manageability Meaningfulness Mastery
114.6 (102.2; 127.0) 40.8 (36.7; 44.9) 42.5 (37.8; 47.1) 31.5(25.3; 37.7) 2.43 (2.01; 2.85)
ISSI AVAT ADAT AVSI ADSI
0.76 (0.61; 0.91) 0.64 (0.47; 0.80) 0.52(0.36; 0.68) 0.65 (0.50; 0.80)
Family climate Closeness Distance Expressiveness Chaos
1.43 0.42 0.30 1.43
(B) Wives of TE-cases SOC, total Comprehensibility Manageability Meaningfulness Mastery
(0.81; (0.10; (0.05; (0.65;
Deviation mean (95% CI) 3 months after intervention
ISSI AVAT ADAT AVSI ADSI
0.68 0.61 0.64 0.76
(0.46; (0.38; (0.49; (0.59;
0.89) 0.84) 0.80) 0.93)
Family climate Closeness Distance Expressiveness Chaos
1.28 0.58 0.63 1.17
(0.56; (0.25; (0.20; (0.45;
2.01) 0.92) 1.05) 1.90)
Repeated measurement P
6.4( 3.2; 15.9) 0.5 ( 3.7; 4.8) 3.9 ( 0.7; 8.5) 2.6 ( 1.4; 6.5) 0.18 ( 0.60; 0.96)
8.6( 6.2; 23.4) 2.7 ( 4.47; 9.8) 3.4 ( 2.9; 9.8) 3.3 ( 2.2; 8.8) 0.28 ( 0.50; 1.06)
0.349 0.721 0.213 0.350 0.661
0.00 0.03 0.06 0.14
0.00 0.07 0.07 0.06
( ( ( (
0.15; 0.25; 0.13; 0.12;
0.15) 0.11) 0.26) 0.25)
1.00 0.728 0.719 0.064
0.15 0.08 0.00 0.52
( ( ( (
0.60; 0.41; 0.34; 1.28;
0.91) 0.25) 0.34) 0.23)
0.663 0.611 0.992 0.158
1.5 ( 10.3; 13.2) 1.83 ( 2.9; 6.7) 0.3 ( 4.0; 4.6) 0.4 ( 4.3; 3.5) 0.19 ( 0.36; 0.75)
5.4 ( 20.8; 10.1) 1.6 ( 6.9; 3.6) 2.6 ( 8.5; 3.3) 0.5 ( 6.20; 5.3) 0.26 ( 0.29; 0.80)
0.434 0.065 0.426 0.972 0.543
0.02 0.06 0.00 0.02
0.03 0.00 0.02 0.04
( ( ( (
0.28; 0.21; 0.13; 0.23;
0.893 0.592 0.970 0.534
0.02 0.09 0.43 0.32
( ( ( (
0.39; 0.43) 0.24; 0.42) 0.90; 0.05) 1.20; 0.54)
( ( ( (
0.13; 0.19; 0.10; 0.01;
0.13) 0.13) 0.23) 0.29)
2.08) 0.74) 0.56) 2.20)
144.1 (131.5; 156.8) 47.5 (41.8; 53.2) 52.8 (47.9; 57.6) 43.8 (39.9; 47.7) 2.90 (2.58; 3.23)
9 months after intervention
( ( ( (
0.12; 0.11; 0.13; 0.09;
the decrease in social contacts, and facilitate the communication between husband and wife. Social support has generally been shown to reduce the effects of stress on health [27]. To have an intimate relationship, e.g. spousal relationship is generally considered to be powerful source of social support [28,29]. The ongoing need of support from their families and particularly from their spouses is the same for TE-subjects as for other patients with a chronic disease [9,31,32]. There might be a risk that this need for support can drain network resources for their wives. Group intervention and education might be ways to avoid increased isolation, and to support the families. The results from the present follow-up study, 3 and 9 months after the intervention, did, however, not show any lasting changes with regard to social network and support neither for the TEpatients nor for the WTE. We have previously found that WTE reported lower availability of social integration. However those who were still gainfully employed did not differ from the referents [30]. Similarly, the WTE in the
0.16) 0.22) 0.14) 0.12)
0.21) 0.20) 0.16) 0.14)
0.910 0.541 0.075 0.423
present study who attended to the group sessions were gainfully employed and may thus have had less benefit from the intervention in reference to social support. The lack of improvement in social network and support for the TEpatients might possibly be due to a less wish for social contacts, as have been indicated in a previous study of TE patients who felt satisfied with a low degree of social contacts [9]. Furthermore, the similarity in ratings of the emotional atmosphere within the couples both before and after the intervention indicate that they were cohesive as families, which should be considered as a sign of adequate functioning and perhaps a less need for improvement in social contacts. For symptom load, only small improvements were seen in over time, although the wives improved more than did the patients. However, the effect did not last over the whole follow-up period. The results concerning intervention effects must be interpreted with some caution because of some weaknesses. The participation was based on self-selection
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among the invited TE-patients. There is a possibility of selection bias most probably working in the direction of participation of the most alert and motivated persons because they chose to attend both the information meeting and the group sessions. Another point of view is that there is some range (0–9 years, median 2,5 years, mode 0 years) of time elapsed since the establishment of the TE-diagnosis, which might have entailed those who had been diagnosed several years ago to have reached a higher degree of adjustment to the disease. Our earlier study indicated a sort of learning to adjust to the disease [10]. Subgroup analysis with respect to duration of the TEdiagnosis might have been preferable but the small number of patients obstructs this idea. An issue that can be raised is the low number of participants, which may not only yield uncertain effect estimates but also a higher probability of making a type II error, i.e., failure to correctly reject the null hypothesis. It is therefore worth noting that the present repeated measures within-subject design has more than sufficient power for detecting a difference between means of the size of 1 standard deviation. Based on clinical experience smaller effects than 1 standard deviation between group mean scores are often considered as uninformative unless the pattern of differences suggest otherwise. Another methodological question is the absence of a control group. Due to the fact that the TE-diagnosis is rather scarce, a control group living in the southern part of the country and diagnosed during the same time could not be found. A consequence is that we cannot know to what extent and in which direction the effect measures would have changed without an intervention or with another intervention method. Perhaps we would have gained additional valuable information of possible effects and meanings of the intervention by use of other types of data sampling methods, such as interviews. 4.2. Practice implications Earlier studies of occupational illnesses have focused on compensation issues and possibilities of returning to work [19]. The satisfaction with the intervention in the present study clearly suggest that an education focused on providing knowledge to patients with a chronic toxic encephalopathy about the lifetimes consequences should be offered to patients and their close relatives. Improved coping of family members is of substantial importance for patients as well. Due to the cognitive limitations in the TE-patient group the duration of the sessions ought to be rather short in order for them to maintain their ability of concentration. The sessions carried on for 90 min, but with a 15-min break after about 40 min. The design of this intervention can easily be adapted to other occupational illnesses and might improve the understanding of social aspects of occupational illnesses.
The results indicate that it is of concern that also the wives are invited to participate but we have considered that perhaps it is not a necessity with 10 sessions.
Acknowledgements The authors thank Michael T.S. Nilsson, Psychologist, for his collaboration and inspiration during the planning of this study and for his work as a therapist in the programme. The educational and intervention programme was supported by a grant from the National Swedish Board of Health and Welfare.
References [1] Ha¨ nninen H. Psychological picture of manifest and latent carbon disulphide poisoning. British Journal of Industrial Medicine 1971;28:374–81. [2] Ha¨ nninen H, Eskelinen L, Husman K, Nurminen M. Behavioral effects of longterm exposure to a mixture of organic solvents. Scandinavian Journal of Work Environment and Health 1976;2:240–55. [3] Lindstro¨ m K, Harkonen H, Hernberg S. Disturbances in psychological functions of workers occupationally exposed to styrene. Scandinavian Journal of Work Environment and Health 1976;2:129–39. [4] Hane M, Axelson O, Blume J, Hogstedt C, Sundell L, Ydreborg B. Psychological function changes among house painters. Scandinavian Journal of Work Environment and Health 1977;3:91–9. [5] Mikkelsen S. Epidemiological update on solvent neurotoxicity. Environment Research 1997;73:101–12. [6] Edling C, Ekberg K, Ahlborg Jr G, et al. Long-term follow up of workers exposed to solvents. British Journal of Industrial Medicine 1990;47:75–82. [7] Morrow LA, Ryan CM, Hodgson MJ, Robin N. Alterations in cognitive and psychological functioning after organic solvent exposure. Journal of Occupational Medicine 1990;32:444–50. [8] Morrow LA, Stein L, Bagovich GR, Condray R, Scott A. Neuropsychological assessment, depression, and past exposure to organic solvents. Applied Neuropsychology 2001;8:65–73. ˚ bjo¨ rnsson G, Ørbæk P, Hagstadius S. Chronic toxic encephalopathy: [9] A social consequences and experiences from a rehabilitation program. Rehabilitation and Nursing 1998;23:38–43. ˚ bjo¨ rnsson G, Pa˚ lsson B, Bergendorf U, et al. Long-term follow-up [10] A of psychological distress, social functioning, and coping style in treated and untreated patients with solvent-induced chronic toxic encephalopathy. Journal of Occupational Environment and Medicine 1998;40:801–7. [11] Hansen L, Knudsen P, Debes F, Bonnesen B, Brun B. Neuropsykologisk genoptræning av patienter med lettere hjerneskade: en metodbeskrivelse og effektundersøgelse (Neuropsychological rehabilitation of patients with a mild brain injury: a description of methods and outcome). Roskilde: Department of Clinical Psychology, St Hans Hospital, 1989. [12] Hansen O, Torpdahl P. Genoptræning av personer med arbejdsbetingede hjerneskader efter opløsningsmiddeleksponering (Rehabilitation of workers with toxic encephalopathy due to solvent exposure). Nordisk Psykologi 1994;46:286–300. [13] Engel L, Andersen LB. Effects of body-mind training and relaxation stretching on persons with chronic toxic encephalopathy. Patient Education and Counselling 2000;39:155–61. [14] de Ridder D, Schreurs K. Developing interventions for chronically ill patients: is coping a helpful concept? Clinical and Psychological Review 2001;21:205–40.
G.L. A˚ bjo¨ rnsson et al. / Patient Education and Counseling 58 (2005) 88–95 ˚ berg-Ørbæk K, Berglund M. Effects of [15] Zetterlind U, Hansson H, A coping skills training, group support, and information for spouses of alcoholics: a controlled randomized study. Nordic Journal of Psychiatry 2001;55:257–62. [16] Cooper H, Booth K, Fear S, Gill G. Chronic disease patient education: lessons from meta-analyses. Patient Education and Counselling 2001;44:107–17. [17] Weingarten SR, Henning JM, Badamgarav E, et al. Interventions used in disease management programmes for patients with chronic illnesswhich ones work? Meta-analysis of published reports. British Medical Journal 2002;325:(7370):925. ˚ bjo¨ rnsson G, Ørbæk P. Neuropsycholo[18] Lindgren M, Hagstadius S, A gical rehabilitation of patients with organic solvent-induced chronic toxic encephalopathy: a pilot study. Neuropsychological Rehabilitation 1997;7:1–22. [19] Dembe AE. The social consequences of occupational injuries and illnesses. American Journal of Industrial Medicine 2001;40: 403–17. [20] Derogatis LR, Lipman RS, Covi L. SCL-90: an outpatient psychiatric rating scale—preliminary report. Psychopharmacological Bulletin 1973;9:13–28. [21] Goldberg D, Williams P. Users Guide to the General Health Questionnaire. Oxford: The NFER-Nelson Publishing Company Ltd.; 1988. [22] Antonovsky A. The structure and properties of the sense of coherence scale. Social Science and Medicine 1993;36:725–33.
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[23] Pearlin LI, Lieberman MA, Menaghan EG, Mullan JT. The stress process. Journal of Health and Social Behavior 1981;22:337–56. [24] Henderson S, Duncan-Jones P, Byrne DG, Scott R. Measuring social relationships: the interview schedule for social interaction. Psychological Medicine 1980;723–34. [25] Unde´ n AL, Orth-Gome´ r K. Development of a social support instrument for use in population surveys. Social Science and Medicine 1989;29:1387–92. [26] Hansson K, Ryde´ n O, Johansson P. Parent-rated family climate: a concomitant to metabolic control in Juvenil IDDM? Family Systems Medicine 1994;12:405–13. [27] House JS, Landis KR, Umberson D. Social relationships and health. Science 1988;241:540–5. [28] Cobb S. Social support as a moderator of life stress. Psychosomatic Medicine 1976;38:300–14. [29] Thoits PA. Stress, coping, and social support processes: where are we? What next? Journal of Health and Social Behavior 1995. Spec No: 53–79. ˚ bjo¨ rnsson G, Pa˚ lsson B, Karlson B, Ørbæk P, O ¨ sterberg K. Psycho[30] A logical distress and coping in women married to men with a diagnosis of solvent-induced chronic encephalopathy. Brain Injury, in press. [31] Ell K. Social networks, social support and coping with serious illness: the family connection. Social Science and Medicine 1996;42:173–83. [32] Habermann B. Spousal perspective of Parkinson’s disease in middle life. Journal of Advanced Nursing 2000;31:1409–15.
Education for men with solvent-induced chronic toxic encephalopathy and their spouses ˚ bjo¨rnsson*, Bjo¨rn A ˚ . Karlson, Palle H. Ørbæk Gunnel L. A Department of Occupational and Environmental Medicine, Section of Behavioral Medicine, Lund University Hospital, S-22185 Lund, Sweden Received 4 November 2003; received in revised form 1 July 2004; accepted 9 July 2004
Abstract In this study an education, and a series of group sessions for patients with solvent-induced chronic toxic encephalopathy (TE) and their spouses are evaluated. Thirty-eight patients and 21 family members participated in a 1-day education scheduled with short lectures on the clinical examination of chronic toxic encephalopathy and the prognosis. A specialist in occupational medicine, a psychologist and a social worker gave the lectures. Small discussion groups were also arranged. Of the participants from the educational days, 16 TE patients and 14 wives attended a 10-week counselling and coping improvement program with separate group sessions once a week, for patients and spouses. Questionnaires were used to assess symptoms, social network, mastery and family climate, and the participants’ satisfaction with the education and the group sessions. The majority of the participants experienced the 1-day information as useful and relevant. The 10-week group sessions were rated as meaningful and the design, number, duration and frequency of the sessions equally good. Self-reported symptoms, social network and mastery were measured before the group sessions, and 3 and 9 months after breaking up the group sessions. In most measurements, there were no statistically significant differences between the three points in time. However, the wives improved more than did the patients but the effect was not lasting the whole follow-up period. Considering the patients’ dependence on their wives, it might be most important that the wives experienced some relief from their own symptoms. # 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Chronic toxic encephalopathy; Patient education; Group sessions
1. Introduction Solvent-induced chronic toxic encephalopathy (TE) is a brain disorder with slow development and only little restitution after cession of exposure. During the last 20 years, there has been awareness and understanding of the adverse health effect of exposure to solvents. From the beginning of the 1970s several studies from the Scandinavian countries observed that solvent-exposed workers had more neuropsychiatric symptoms and performed poorer results in neuropsychological tests in comparison with unexposed persons [1–4]. Later studies have confirmed these findings [5]. * Corresponding author. Tel.: +46 46 17 72 95; fax: +46 46 17 72 85. ˚ bjo¨rnsson). E-mail address: [email protected] (G.L. A
The clinical picture is often characterized by vague and non-specific symptoms such as fatigue, memory dysfunction, concentration problems, a depressed state of mind, irritability, headache, affect lability, sleep disturbances and lack of self-confidence [6,7]. In a recent study, Morrow et al. [8] found no differences between exposed and non-exposed subjects on measures of general intelligence. Owing to the slow development of the disorder, both the patients and their families are often very concerned about what is actually going on and the growing emotional instability influences both family members and their social relations. The wives often have to take an increased responsibility concerning both practical issues and social contacts [9]. Although there is substantial knowledge about the possible negative psychological consequences of being long-term exposed
0738-3991/$ – see front matter # 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2004.07.006
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to solvents, so far little has been done to ease the situation for the patient and his family. Without knowledge about the consequences of a mild brain disorder, it is not easy to cope with the situation neither for the patients nor for the families. The most appreciated feature in a previous intervention study for TE-patients and their spouses was sharing experiences with others in the same situation, and the participation of the spouses made it easier to talk about the consequences of the disorder in their families [9]. The spouses expressed great appreciation for having received information about TE and its prognosis. A follow-up of this study after 7 years showed improved social functioning and reduced distress in the treated TE patients, although they were not better off than a group of untreated TE-patients only examined with the same self-report measures at this point in time [10]. A study using crisis intervention and cognitive training in a group of TE-patients found improvement in selfconfidence, affect control, and memory [11]. In another study TE-patients showed improved coping skills and reduced emotional strain after an intervention in which the family participated in group sessions, cognitive training and if needed, family therapy [12]. In yet another study, eight TE subjects participated for 8 weeks in body-mind training and relaxation resulting in improved ability for physical and mental relaxation during the training period [13]. No longterm follow-up has been reported from any of these studies. For other chronic diseases, education and information have been directed to both patients and spouses with different applications, e.g. coping training and behavior modification [14–16]. An evaluation of 102 different interventions programmes for a wide range of patient categories showed patient education to be the most commonly implemented types of programmes [17]. In contrast to our previous main focus on neuropsychological training of the TE-patients [18], the present study focused on education and to share experiences about how other couples cope with the disease. This education and intervention for TE-patients and their wives was supposed to be beneficial, and facilitate to cope with a changed life situation. The specific aim was to examine whether the opportunity to communicate with others in a similar situation and to receive information on the medical, psychological, and social effects of TE could reduce the psychological distress of TE-patients and their spouses and increase the well-being of the families.
2. Material and methods 2.1. Procedure 2.1.1. One day of information An informational and educational venture for TE-patients and their spouses was given in four different places in the southern part of Sweden, 1995–1996. Each occasion lasted for 1 day and was scheduled with short lectures on how the
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clinical examination of chronic toxic encephalopathy is carried out, and on the prognosis. The participants were informed about the psychological and social consequences of solvent-induced chronic toxic encephalopathy. They were also informed about the criteria of the Swedish National Social Insurance Office for approval of TE as an occupational disease. A specialist in occupational medicine, a psychologist and a social worker gave the lectures. To give the participants an opportunity to share experiences, small discussion groups were arranged. These groups were made up of patients and spouses separately as well as mixed depending on the topic. At these ventures, the TE-patients and their wives/ spouses (WTE) were invited to participate in group sessions planned to take place once a week for a 10-week period, for patients and spouses separately. 2.1.2. Information on group sessions Those who chose to participate in the group sessions were subsequently informed about the purpose of the sessions and interviewed by the psychologist and the social worker who were going to be group leaders. The psychologist carried out interviews with the patients and the social worker with the wives. The main objective of interviewing the patients was to evaluate whether they were able to participate in group sessions with respect to their psychological condition. The objective of the interview with the wives was to gain information about their expectations and needs. Those, who after the interviews were still interested in participating received further information about the planned evaluation occasions and were asked to give their consent. 2.2. Subjects In the regional educational programme, 38 TE patients and 21 members of their families participated. These patients and family members had not participated in our previous rehabilitation programmes [9,18]. Sixteen TE patients and fifteen of their wives agreed to participate in the 10 weeks of group sessions. One of the TE-patients came only once because he developed a major depressive episode and two of the TE-patients participated only twice. One wife did not want to participate at all, two agreed but did not turn up at all, and one wife became ill and participated only once. The patients had been exposed to organic solvents for periods ranging from 12 to 40 years (the median time of exposure was 25 years) and had been diagnosed at the departments of Occupational Medicine in Malmo¨ or Lund 0–9 years previously (median 2.5, mean 3.1 years). They had worked as painters or spray painters (n = 9), printers (n = 4), car cleaner (n = 1), process operator (n = 1) and shoemaker (n = 1). Seven were still employed, five were on sick leave and four had disability pensions. The TE-patients were aged 44–63 years (median 55) and their wives 44–69 years (median 54). All but one of the wives was in gainful employment.
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Power estimates indicated the used number of subjects to be sufficient for within-subject comparison. 2.3. The group sessions At the start of the group sessions, 16 TE-patients and 13 of the wives attended. They were divided into four groups, the patients and their wives into separate groups. One psychologist conducted the groups of patients and one social worker the groups of spouses once a week for 10 weeks. Each session was limited to 90 min, but with a break for 15 min after 40 min. We had 4–8 participants in each group. The group sessions took place at two locations to reduce the participants’ travelling. The overall aim of the group sessions was to increase the participants’ knowledge about solvent-induced chronic encephalopathy and to increase their ability to cope with the altered situation for both TE and WTE. The rationale was that being short of knowledge about the disability may be a risk for the development of more isolation and problems in the family. Various emotional reactions may be misinterpreted as direct consequences of the brain disorder and thus interfere with adequate coping, or even worse, cause the patients to be reluctant to accept relevant psychiatric treatment. At the first meeting confidentiality rules were agreed upon. The themes in the patient and in the spouse groups had in part different objectives. The patient groups were focused on establishing new strategies to cope with problems common for TE-patients, e.g. concentration difficulties, aggressiveness and social withdrawal. A central part was to coach social interaction by giving feedback and redefining troubles as mere trifles possible to cope with. In the WTE-group, one objective was to make participants aware of ways to avoid the disease taking control of family life and activities. Another goal was to provide alternative solutions to problems emerging from coping with the trivialities of everyday life. 2.4. Evaluation methods 2.4.1. Information and education programme The information and education programme was evaluated at the end of the day by a questionnaire measuring the subjects’ opinions on the number and length of the lessons and small group discussions, the size of the groups, the relevance of the small group discussions, and how they experienced talking to others about their problems. The relevance of the lectures was rated on a four-point scale (very relevant, relevant, somewhat relevant and not at all). 2.4.2. The group sessions The 10 weeks of group sessions were evaluated by questionnaires (see Table 1). On completion, the 10 group sessions were evaluated by traditional evaluation questions. The participants were asked about their opinion of the
Table 1 Schedule for evaluation methods Before the group sessions
After the group sessions
After 3 months
After 9 months
GHQ-30 SCL-90 SOC Mastery ISSI Family Climate
Evaluation questionnaire
GHQ-30 SCL-90 SOC Mastery ISSI
GHQ-30 SCL-90 SOC Mastery ISSI Family Climate
GHQ: general health questionnaire; SCL: symptom checklist; SOC: sense of coherence; ISSI: interview schedule for social interaction.
appropriateness of number, length, and the dispersion of the sessions, and of the group size, as well as how they experienced listening to and telling the other group members about problems related to TE. The latter two questions were rated on a four-point scale (with labels ranging from hard to not hard at all). They were also asked if they had noticed changes concerning mood, somatic complaints or isolation by ratings on a five-point scale (clear improvement, some improvement, neither improvement nor impairment, some impairment, and clear impairment). The effects of the group sessions were further evaluated by a set of structured and well validated and internationally used questionnaires on coping and well-being administered once before the start of the group sessions, and 3 and 9 months after the completion of the intervention. These types of questionnaires have previously been used in our studies of TE-patients [10]. 2.4.3. Questionnaires 2.4.3.1. Symptom checklist-90. The symptom checklist-90 (SCL-90) measures the respondent’s psychosomatic and emotional distress during the last week [20]. The inventory comprises 90 items covering nine primary symptom scales. Respondents are asked to indicate to what extent they have been bothered by each symptom during the last week, on a 5point Likert scale (scored 0–4) with the points ‘not at all’, ‘a little bit’, ‘moderately’, ‘quite a bit’, and ‘extremely’. The global severity index (GSI) is calculated as the average score of all 90 items and represents the overall level of distress. 2.4.3.2. General health questionnaire. The 30-item version of the general health questionnaire (GHQ) aims at measuring deterioration in the subject’s well-being during the last few weeks compared to the respondent’s habitual state [21]. All items are rated on a four-point Likert scale labeled with response alternatives ‘not at all’, ‘not more than usual’, ‘somewhat more than usual’ and ‘much more than usual’. In the present study, only a global measure comprising the average of all 30 items was used. 2.4.3.3. Sense of coherence. The sense of coherence (SOC) questionnaire is supposed to evaluate the availability and willingness to use adaptive coping resources scored in three
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dimensions: comprehensibility, manageability and meaningfulness. The comprehensibility dimension stands for the sense of confidence that the stimuli deriving from one’s internal and external environments are structured, predictable and explicable. The manageability dimension refers to a sense of having available resources to encounter demands posed by the environmental stimuli. The third dimension, meaningfulness measures to which degree these demands are challenges well worthy of the subject’s investment and engagement. SOC is measured on a 29-item, 7-point scale [22]. The respondent is asked to indicate a number, from 1 to 7, with the endpoints wording: ‘very often’ or ‘very seldom or never’. Scale scores are computed as the average of the item scores. The higher the score, the stronger the SOC. 2.4.3.4. Mastery. The mastery scale comprises statements about the sense of being in control of the demands and problems in daily life. The inventory contains seven items where the subjects are asked to rate themselves on a fourpoint scale with the wording; ‘applies completely’, ‘applies fairly well’, ‘does not apply particularly well’, and ‘does not apply at all’ [23]. Scale score is computed as the average of the item scores, with a higher score indicating a greater sense of mastery. 2.4.3.5. Social interaction. Interview schedule for social interaction (ISSI) is a self-report questionnaire designed for assessing both quantity and quality of social support and interaction [24, p. 124]. The questionnaire measures the respondent’s availability of and satisfaction with close affective relationships and also the relationship with friends, work-mates and acquaintances. In this study a shortened form, comprising 33 items, developed in Sweden was used [25]. Two scales measure access to deep emotional contacts ‘availability of attachment’ (AVAT) and the subject’s satisfaction with these contacts ‘adequacy of attachment’ (ADAT). Another two scales measure access to social contacts ‘availability of social integration’ (AVSI) and satisfaction with these contacts ‘adequacy of social integration’ (ADSI). Scale scores are computed as the average of the item scores. 2.4.3.6. Family climate. The family climate is a Swedish self-rating scale comprising 85 adjectives selected to describe different aspects of emotional atmosphere in the family [26]. Through factor analyses four different aspects of family climate have been identified. Closeness (e.g. harmony, warmth, and security; 28 words), distance (e.g. coolness, rejection, and negative feelings, 11 words), expressiveness (e.g. open and direct expression of feelings, 6 words) and chaos (e.g. confusion, nervousness, and instability, 6 words). The subject marks which of the adjectives that best characterize his or her family. An index is then calculated for each factor. A factor score of 1 indicates that the same proportion of words has been marked on a particular factor as on the total scale.
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2.5. Statistical analysis P-values below 0.05 were considered statistically significant. Due to unsystematic loss of data, the general linear mixed models module in SPSS 11.5 was used to estimate over all treatment effects and treatment effects at separate assessment points (SPSS, Inc., 1998). A repeated measures model was specified and an iterative model fitting strategy was adopted. For all analyses, an ante-dependence first-order and a compound symmetry covariance structure was tested. The ante-dependence first-order structure provided in all cases a better fit, so it was generally applied. Models were solved using the restricted maximum likelihood (REML) method. Statistical inference for the mean structure of data was made with fixed effects models and approximate Type III F-tests and, approximated t-tests, including an overall intercept. To assess the consistency between the couples ratings in the family climate scale, the intraclass correlation coefficients were used.
3. Results The evaluation of the 1-day information and education showed that the lessons were experienced as meaningful and that the majority of both patients and spouses obtained new knowledge. The number of lessons and the duration were considered to be appropriate by the patients (92 and 87%, for the two aspects, respectively) as well as by the spouses (90% for both aspects). Ninety-seven percent of the patients and ninety-one percent of the spouses rated the group discussions as relevant or very relevant. The evaluation of the 10-week group sessions showed that a majority of the participants, both patients and spouses, appreciated the design of the sessions with respect to the number of them (TE 73% and WTE 77%), duration of each session (TE 87% and WTE 92%), and their frequency (TE 73% and WTE 85%). Concerning changed mood, clear improvement was reported from 7% of TE and 23% of WTE and some improvement was reported from 40% of the TE and 8% of WTE. Somatic complaints did not change among the TE-patients while 23% of the WTE reported some improvement. Both TE (33%) and WTE (31%) stated improvement concerning social isolation. None of the participants reported impairment concerning mood, somatic complaints or social isolation. However, 33% of the patients and 23% of the spouses found the group sizes too small. Almost all the participants reported the sharing of experiences in groups as meaningful, and most of them did not find it difficult to talk about their own problems nor to listen to those of others. To analyse the questionnaire outcome from the 10-week group sessions, a repeated measurement design was used. For the TE-patients the analysis showed statistically significant main effects over the three measurements in one variable of the SCL-90 scale were shown (Table 2A).
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Table 2 Symptoms of psychological distress (SCL-90) and general health questionnaire (GHQ) before intervention and changes 3 and 9 months after participation in the intervention program Mean (95% CI) before intervention
Deviation mean (95% CI) 3 months after intervention
9 months after intervention
Repeated measurement P
(A) TE-cases SCL-90 Somatization Anxiety Depression Interpersonal sensitivity Obsession-compulsion Hostility Phobic anxiety Paranoid ideation Psychoticism GSI GHQ
1.46 1.47 1.65 1.12 2.27 1.14 1.14 0.82 0.67 1.37 2.56
1.87) 1.84) 1.98) 1.37) 2.70) 1.47) 1.57) 1.10) 0.95) 1.63) 2.98)
0.19 0.37 0.46 0.18 0.41 0.05 0.18 0.07 0.15 0.24 0.10
( ( ( ( ( ( ( ( ( ( (
0.51; 0.93; 0.88; 0.75; 0.85; 0.69; 0.68; 0.48; 0.62; 0.61; 0.36;
0.12) 0.20) 0.04) 0.39) 0.04) 0.58) 0.32) 0.62) 0.32) 0.13) 0.16)
0.05 0.15 0.13 0.01 0.02 0.06 0.04 0.20 0.15 0.04 0.20
( ( ( ( ( ( ( ( ( ( (
0.52; 0.70; 0.56; 0.53; 0.38; 0.29; 0.55; 0.39; 0.57; 0.39; 0.52;
0.43) 0.40) 0.30) 0.50) 0.41) 0.42) 0.46) 0.80) 0.27) 0.32) 0.12)
0.369 0.247 0.050 0.631 0.075 0.728 0.571 0.656 0.758 0.196 0.444
(B) Wives of TE cases Somatization Anxiety Depression Interpersonal sensitivity Obsession-compulsion Hostility Phobic anxiety Paranoid ideation Psychoticism GSI GHQ
0.77 (0.44; 1.11) 0.61 (0.31; 0.91) 0.85 (0.57; 1.12) 0.62 (0.40; 0.85) 0.82 (0.59; 1.05) 0.27 (0.12; 0.43) 0.31 (0.13; 0.48) 0.50 (0.27; 0.73) 0.21 (0.09; 0.33) 0.61(0.42; 0.79) 2.10 (1.85; 2.35)
0.24 0.21 0.08 0.28 0.33 0.02 0.06 0.07 0.04 0.15 0.06
( ( ( ( ( ( ( ( ( ( (
0.55; 0.46; 0.38; 0.53; 0.65; 0.15; 0.22; 0.31; 0.21; 0.34; 0.17;
0.06) 0.03) 0.22) 0.03) 0.00) 0.10) 0.10) 0.16) 0.12) 0.03) 0.29)
0.18 0.09 0.01 0.13 0.19 0.21 0.02 0.02 0.03 0.01 0.03
( ( ( ( ( ( ( ( ( ( (
0.53; 0.18) 0.37; 0.55) 0.38; 0.35) 0.46; 0.20) 0.56; 0.18) 0.15;0.57) 0.18; 0.22) 0.32; 0.28) 0.20; 0.25) 0.26; 0.29) 0.31; 0.25)
0.170 0.044 0.789 0.027 0.099 0.239 0.013 0.709 0.313 0.012 0.667
(1.05; (1.09; (1.32; (0.88; (1.85; (0.80; (0.71; (0.54; (0.39; (1.11; (2.13;
Their wives showed statistically significant effects in three variables of the SCL-90 scale (Table 2B). On the SOC, ISSI, mastery, GHQ, and family climate scale, there were no statistically significant differences between the three points of time, neither for the patients nor their wives (Table 3A and B). Comparing the ratings on the family climate scales within the couples showed that the patients and their wives rated their family function almost identically, showing interclass correlation 0.8. However, as expected, the patients displayed a significantly higher symptoms load than their wives before as well as after the intervention in most of the SCL-90 scales. At the first measurement, the wives scored statistically significantly higher on the SOC scale than did TE-patients in the total as well as in the subscales meaningfulness, and manageability (P = 0.001). On the two next occasions of measurement, there were no differences in any of the SOC scales between the groups. On the scales of GHQ, mastery, family climate and ISSI there were no differences between TE and WTE on any of the occasions.
4. Discussion and conclusion The focus in the present study was if the opportunity to communicate with people in the same situation and gaining
increased knowledge about medical, psychological and social effects of chronic toxic encephalopathy could reduce the psychological distress and increase the coping ability of the TE-patients and their spouses. The high appreciation of the 1-day meeting indicated this to be a suitable educational design for TE-patients and their spouses. The group sessions were a short-term intervention and most participants were pleased with the design of the sessions. However, some of the subjects would have preferred the groups to have been somewhat larger. In conclusion, both the educational 1-day programme and the group sessions were evaluated as meaningful and relevant by both patients and wives, and indicated to be a suitable design. Only small improvements were, however, seen in symptom load over time, although the wives improved more than did the patients. 4.1. Discussion During our more than 20-year long clinical experience of TE-patients and spouses, we have observed that TEpersons often miss the opportunity to share experiences with other TE-patients. In the present study, this notion was supported in the evaluations of the patients as well as of their spouses. Similar observations have been noted in a formal interview study of TE-patients and their spouses (unpublished data). Both TE and WTE have to adjust to new routines due to the disease. To support them in this process may counteract
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Table 3 Sense of coherence (SOC), mastery, social interaction scores (ISSI) and family climate scale before intervention, and changes 3 and 9 months after participation in the intervention program Mean (95% CI) before intervention (A) TE-cases SOC, total Comprehensibility Manageability Meaningfulness Mastery
114.6 (102.2; 127.0) 40.8 (36.7; 44.9) 42.5 (37.8; 47.1) 31.5(25.3; 37.7) 2.43 (2.01; 2.85)
ISSI AVAT ADAT AVSI ADSI
0.76 (0.61; 0.91) 0.64 (0.47; 0.80) 0.52(0.36; 0.68) 0.65 (0.50; 0.80)
Family climate Closeness Distance Expressiveness Chaos
1.43 0.42 0.30 1.43
(B) Wives of TE-cases SOC, total Comprehensibility Manageability Meaningfulness Mastery
(0.81; (0.10; (0.05; (0.65;
Deviation mean (95% CI) 3 months after intervention
ISSI AVAT ADAT AVSI ADSI
0.68 0.61 0.64 0.76
(0.46; (0.38; (0.49; (0.59;
0.89) 0.84) 0.80) 0.93)
Family climate Closeness Distance Expressiveness Chaos
1.28 0.58 0.63 1.17
(0.56; (0.25; (0.20; (0.45;
2.01) 0.92) 1.05) 1.90)
Repeated measurement P
6.4( 3.2; 15.9) 0.5 ( 3.7; 4.8) 3.9 ( 0.7; 8.5) 2.6 ( 1.4; 6.5) 0.18 ( 0.60; 0.96)
8.6( 6.2; 23.4) 2.7 ( 4.47; 9.8) 3.4 ( 2.9; 9.8) 3.3 ( 2.2; 8.8) 0.28 ( 0.50; 1.06)
0.349 0.721 0.213 0.350 0.661
0.00 0.03 0.06 0.14
0.00 0.07 0.07 0.06
( ( ( (
0.15; 0.25; 0.13; 0.12;
0.15) 0.11) 0.26) 0.25)
1.00 0.728 0.719 0.064
0.15 0.08 0.00 0.52
( ( ( (
0.60; 0.41; 0.34; 1.28;
0.91) 0.25) 0.34) 0.23)
0.663 0.611 0.992 0.158
1.5 ( 10.3; 13.2) 1.83 ( 2.9; 6.7) 0.3 ( 4.0; 4.6) 0.4 ( 4.3; 3.5) 0.19 ( 0.36; 0.75)
5.4 ( 20.8; 10.1) 1.6 ( 6.9; 3.6) 2.6 ( 8.5; 3.3) 0.5 ( 6.20; 5.3) 0.26 ( 0.29; 0.80)
0.434 0.065 0.426 0.972 0.543
0.02 0.06 0.00 0.02
0.03 0.00 0.02 0.04
( ( ( (
0.28; 0.21; 0.13; 0.23;
0.893 0.592 0.970 0.534
0.02 0.09 0.43 0.32
( ( ( (
0.39; 0.43) 0.24; 0.42) 0.90; 0.05) 1.20; 0.54)
( ( ( (
0.13; 0.19; 0.10; 0.01;
0.13) 0.13) 0.23) 0.29)
2.08) 0.74) 0.56) 2.20)
144.1 (131.5; 156.8) 47.5 (41.8; 53.2) 52.8 (47.9; 57.6) 43.8 (39.9; 47.7) 2.90 (2.58; 3.23)
9 months after intervention
( ( ( (
0.12; 0.11; 0.13; 0.09;
the decrease in social contacts, and facilitate the communication between husband and wife. Social support has generally been shown to reduce the effects of stress on health [27]. To have an intimate relationship, e.g. spousal relationship is generally considered to be powerful source of social support [28,29]. The ongoing need of support from their families and particularly from their spouses is the same for TE-subjects as for other patients with a chronic disease [9,31,32]. There might be a risk that this need for support can drain network resources for their wives. Group intervention and education might be ways to avoid increased isolation, and to support the families. The results from the present follow-up study, 3 and 9 months after the intervention, did, however, not show any lasting changes with regard to social network and support neither for the TEpatients nor for the WTE. We have previously found that WTE reported lower availability of social integration. However those who were still gainfully employed did not differ from the referents [30]. Similarly, the WTE in the
0.16) 0.22) 0.14) 0.12)
0.21) 0.20) 0.16) 0.14)
0.910 0.541 0.075 0.423
present study who attended to the group sessions were gainfully employed and may thus have had less benefit from the intervention in reference to social support. The lack of improvement in social network and support for the TEpatients might possibly be due to a less wish for social contacts, as have been indicated in a previous study of TE patients who felt satisfied with a low degree of social contacts [9]. Furthermore, the similarity in ratings of the emotional atmosphere within the couples both before and after the intervention indicate that they were cohesive as families, which should be considered as a sign of adequate functioning and perhaps a less need for improvement in social contacts. For symptom load, only small improvements were seen in over time, although the wives improved more than did the patients. However, the effect did not last over the whole follow-up period. The results concerning intervention effects must be interpreted with some caution because of some weaknesses. The participation was based on self-selection
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among the invited TE-patients. There is a possibility of selection bias most probably working in the direction of participation of the most alert and motivated persons because they chose to attend both the information meeting and the group sessions. Another point of view is that there is some range (0–9 years, median 2,5 years, mode 0 years) of time elapsed since the establishment of the TE-diagnosis, which might have entailed those who had been diagnosed several years ago to have reached a higher degree of adjustment to the disease. Our earlier study indicated a sort of learning to adjust to the disease [10]. Subgroup analysis with respect to duration of the TEdiagnosis might have been preferable but the small number of patients obstructs this idea. An issue that can be raised is the low number of participants, which may not only yield uncertain effect estimates but also a higher probability of making a type II error, i.e., failure to correctly reject the null hypothesis. It is therefore worth noting that the present repeated measures within-subject design has more than sufficient power for detecting a difference between means of the size of 1 standard deviation. Based on clinical experience smaller effects than 1 standard deviation between group mean scores are often considered as uninformative unless the pattern of differences suggest otherwise. Another methodological question is the absence of a control group. Due to the fact that the TE-diagnosis is rather scarce, a control group living in the southern part of the country and diagnosed during the same time could not be found. A consequence is that we cannot know to what extent and in which direction the effect measures would have changed without an intervention or with another intervention method. Perhaps we would have gained additional valuable information of possible effects and meanings of the intervention by use of other types of data sampling methods, such as interviews. 4.2. Practice implications Earlier studies of occupational illnesses have focused on compensation issues and possibilities of returning to work [19]. The satisfaction with the intervention in the present study clearly suggest that an education focused on providing knowledge to patients with a chronic toxic encephalopathy about the lifetimes consequences should be offered to patients and their close relatives. Improved coping of family members is of substantial importance for patients as well. Due to the cognitive limitations in the TE-patient group the duration of the sessions ought to be rather short in order for them to maintain their ability of concentration. The sessions carried on for 90 min, but with a 15-min break after about 40 min. The design of this intervention can easily be adapted to other occupational illnesses and might improve the understanding of social aspects of occupational illnesses.
The results indicate that it is of concern that also the wives are invited to participate but we have considered that perhaps it is not a necessity with 10 sessions.
Acknowledgements The authors thank Michael T.S. Nilsson, Psychologist, for his collaboration and inspiration during the planning of this study and for his work as a therapist in the programme. The educational and intervention programme was supported by a grant from the National Swedish Board of Health and Welfare.
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