The International Journal of Psychosocial Rehabilitation
Living with unexplained somatic symptoms
A combined qualitative and quantitative study of life-stories from rehabilitation clients



Peter Elsass, D.Ms. cand.psych.
Bodil Jensen,
Rikke Mørup, cand.psych.
Marie Høgh Thøgersen, cand.psych  

 
 
Centre for Humanistic Health Research, Institute of Psychology, University of Copenhagen
&
Department of Social Medicine, Aalborg Hospital
______
 
 
 
  Citation:
Elsass P., Jensen B., Morup R., & Thogersen MT (2006) Safe Minds – Living with unexplained somatic symptoms:
 
A combined qualitative and quantitative study of life-stories from rehabilitation clients.
 International Journal of Psychosocial Rehabilitation.
11 (1), 11-20


Author responsible for correspondence:
Peter Elsass
Institute for Psychology
Landemaerket 9
1119  Copenhagen K
DENMARK
 


Abstract
Objective: To compare life-stories written by rehabilitation patients with medically unspecific complaints with life-stories written by other patients at the same rehabilitation centre.
Methods: 136 stories were divided into four groups: well-defined somatic complaints, unspecific complaints, a combination of well-defined and unspecific complaints and a group of exclusively mental and psychological complaints. Data-driven categories in the texts were identified and used for non-parametrical statistical tests.
Results: Overall, the life-stories described a high amount of stress in both childhood and adulthood. But the patients with unspecific complaints differed from all the other groups in that they experienced a significant more stressful work-load.  They were the most dissatisfied group and revealed the highest wish for pension.
Conclusion: Although our study has many constraints it support the hypothesis that clients with medically unexplained and vague symptoms express a view of their daily lives as filled with more burdens and difficulties than do other clients in the same rehabilitation setting.
 
Keywords:  Chronic fatigue syndrome; Illness beliefs; Life-stories; Somatoform disorders.


Introduction
The classification, conceptualization and treatment of patients with “medically unexplained (somatic) symptoms” are an ongoing debate. There are different positions in the debate where the patient is often depicted as a marginal, neglected wasteland between the walled citadels of medicine and psychiatry (Editorial 2004). In a broader interdisciplinary context, they present a problem for the integrity of medicine and psychiatry and are therefore often conveniently removed or exported to related, disciplines; from medicine to psychiatry and further to the social sciences.  These different positions do not exclude each other, but rather represent fundamental conflicts between the present professional conceptions of illness (Afari & Buchwald 2003). The scientific debates are, however, characterized by a lack of empirical evidence for the patient’s perspective. Although various descriptions of patient experiences exist in the literature on e.g. somatoform disorders and so-called functional illnesses, these are usually presented in questionnaires and semi structured interviews aimed for clinical assessment. Few have focused on the patients biographies (Bury 1982) or life stories (Frank 1993, Williams 1994) and used an observational or qualitative method of inquiry aimed to elicit and describe the beliefs of the patients in their own terms (Clements et al. 1997).

This article contributes with a phenomenological study that gives priority to the patient and his /her subjective position guided by his own formulations. The aim is to compare life-stories written by rehabilitation patients with unspecific and unexplained medical complaints with the life-stories written by other patients at the same institution with well defined medical complaints, in order to examine the content of their “first persons experience”.

The study is a “natural” study, where the population of a rehabilitation center, were required to write down their life-story as part of a training program.
 
METHODS
Population and life-stories
In the period 1998- 2002, 628 patients completed a rehabilitation course at a Danish rehabilitation center (YDUN Rehabilitation Center, Department of Social Medicine, Aalborg Hospital. The clients have been referred with a broad spectrum of medical and psychiatric diagnoses. During a three month rehabilitation course, participants were requested to write down their life-stories as one out of various course activities, and in the first five weeks of the course, time was set aside each day for writing these stories. The participants were free to develop the form and content of the stories as they wished.

In 2003 The Social-Medical Unit,
Aalborg Hospital, contacted 610 participants and asked if they were willing to participate in our research project by anonymously making their life-stories accessible. 230 participants approved and contributed their life-story.

10 stories were disregarded due to missing pages and lack of basic information, such as gender and age. To make the data comparable and suitable for a quantitative analysis 84 stories were disregarded because of stories of less than 2000 words, and stories containing less than 250 words under general items of childhood or adulthood.


136 life-stories fulfilled the criteria, and were considered suitable for the analysis. Of these 136 stories, 58 were written by men, and 78 by women, the average age was 40, and the age-range was from 21 to 61 years old. The average story was of 5022 words, the shortest was 2550 words and the longest was 23750 words.

 
Quantitative and Qualitative analysis
A traditional qualitative analysis has not been applied, rather a systematic reading and recording of units of meaning derived and grounded from the stories. In 30 randomly chosen life-stories, units of meaning in the text have been identified and categorized guided by our interest in 1. general level of stress in childhood and adulthood, 2. specific work-related stresses, 3. self perception and causal understanding of symptoms, 4. user satisfaction and requirement of retirement for pension. A scoring manual was developed on the basis of these data-driven categories. A further 30 life-stories were scored with the manual, following which the manual was corrected and completed. All 136 life-stories were then coded of the authors RM and MHT according to the final scoring manual containing 105 individual categories.  Disagreement between the scoring was solved on weekly meetings and discussed with the research group.

The number of life-stories mentioning the categories has been estimated both as 1) a “dichotomized presentation;” (does a life-story mention a category or not), and 2) as a “quantitative presentation,” (how many times a life-story mentions one category). The dichotomized presentation, could, for instance, be the number of life-stories mentioning “fatigue” one or several times. The quantitative presentation would be the number of life-stories that mention “fatigue” once, twice, three times, four times etc.  If the same result for these two ways of presenting the data is seen, it was concluded that the length of the life-stories does not have a significant influence on the result. 


The results will be presented as single categories in actual numbers and percentages and where similarities was found as general categories in median and interquartile range. Non-parametric statistical analysis has been applied with the use of  Kruskal Wallis test to estimate the statistical significance.

 
RESULTS
COMPLAINTS
In the life-stories ten categories of complaints emerged. In the following these ten complaints are dichotomized presented as a percentage of the total amount of life-stories containing the category of complaint, no matter how many times the individual patient has mentioned the category.
              62 % General pain
              56 % Back-pain
              40 % Fatigue
              38 % Anxiety
              25 % Depression
              23 % Drug Abuse
              16 % Psychiatric diagnostic symptoms
              16 % ”Worn down”
              8 %  Suicide attempts
              56 % Other mental problems                                                                                                 
 
Types of complaints
It was feasible to put the individual categories together in the following four groups:
  1. Well-defined compliants:  Complaints are  mentioned in relation to clear somatic etiology, such as back pain after a car accident or due to medical illness. 19% (18 female, 8 male)
  2. A combination of well-defined and unspecific complaints: The complaints refer to a medical diagnosis combined with additional complaints of unexplained medical symptoms. 22% (21 female, 9 male)
  3. Unspecific complaints: The compliants are vauge and medically unspecific, and mentioned in relation to fatigue, stress and burn-out. The complaints can be confined such as back-pain or headache, however they are mentioned without relation to a specficic etiology.
  4.  43% (52 female, 6 male)Mental/ psychological complaints: Exclusively mental and psychological complaints such as anxiety and depression. 16% (15 female, 7 male).
 
The total population has a predominance of females over males, for the group with exclusively vague and unspecific complaints the gender difference is significantly different from the other groups (p< 0.045).
 
GENERAL LIFE STRESSES
Stress categories
In the life-stories there are 45 categories for experiences of stress. In the following dichotomized presentation the 15 most frequently mentioned categories illustrates the total number of life-stories containing this category.
             
Childhood:
              59 % other problems with parents
              46 % other undefined burdens
              37 % high level of responsibility and workload
              31 % experiences of being bullying
              29 % learning difficulties
              27 % loneliness
              26 % parent abuse
              21 % physically ill parent
              21 % economic problems
              18 % parent divorce
              16 % parent with drug abuse
              14 % loss of one or both parents
              13 % mentally ill parent
              12 % sexual abuse
              11 % placement outside home
 
Adulthood:
              59 % high level of workload and stress
              51 % unemployment, 18% more than three years
              50 % divorce, one or more times
              44 % being fired from job
              43 % economic problems
              40 % loss of parent or sibling
              31 % drug abusing spouse
              27 % loneliness
              26 % abusive spouse
              14 % loss of spouse
              9 % mentally ill spouse
              9 % children placed outside home
              8 % physically ill spouse
              6 % bullied at work
              5 % sexual abuse outside marriage
 
General categories of stress
The individual categories have been combined in three general categories as follows:
 
1: Stressful experiences in childhood: consisting of 11 categories concerning family relations, 4 categories concerning social problems and 6 categories concerning other problems.
 
2: Stressful experiences in adulthood: consisting of 15 categories concerning family relations, 4 categories concerning social relations, and 4 categories concerning other problems.
 
3: Stressful experiences in both childhood and adulthood: consisting of all of the 45 categories concerning stressful expereinces. 
 
The life-stories are characterized by many descriptions of stressful experiences. In total, 89% describe stressful experiences in childhood, 39% mention at least four categories and in most cases stressful experiences such as incest, suicide attempts, drug abuse, and abuse. 94% describe stressful experiences in adulthood. 29% mention at least four of these categories.
 
Tabel 1.
Stress and type of complaint
The number of times a patient mentions one or more of the categories in the three general stress categories in the median and interquartile range.
 
   1. Well-defined complaints
(N = 26)
2. Combination of well-defined and vague complaints
 (N= 30)
 3. Unspecific complaints
(N=58)
 4. Mental / Psychological complaints
(N=22)
1: Stressful experiences in childhood 3
(0.75 - 11.25)
7
(4.00 - 10.25)
8
(4.00 - 13.25)
8.5
(5.75 - 14.00)
2: Stressful experiences in adulthood 7
(3.00 - 16.25)
6.5
(4.75 - 15.00)
10
(7.00 - 17.00)
9
(4.75 - 15.25)
3: Sum of Stressful experiences 12
(4.00 - 29.50)
17
(7.00 - 22.50)
19
(11.75 - 28.25)
19.5
(13.00 - 28.50)
 
Many stressful experiences are mentioned by all four groups of patients. Although the groups with unspecific complaints and with mental /psychological complaints, do not differ significantly from each other, compared to the two other groups, their mention of stressful experiences is significantly higher, particularly in childhood.

Overall comparisons were made between the four groups using the Kruskal Wallis test. Where the overall effect was found to be significant all pairwise comparisons between the four groups were examined, also using the Kruskal Wallis test

Dichotomized estimates: General category 1: groups 1,2,3 and 4 (p < 0.01 ), 1 and 3 (p < 0.01), 1 and  4 (p < 0.001). General category 3: groups1 and 3 (p < 0.02 ).

Quantity estimates: General category 1: groups 1,2,3 and 4 (p < 0.02), 1 and 3 (p < 0.01), 1 and 2 (p < 0.05) 1 and 4 (p < 0.01). General category 2: groups 2 and 3 (p < 0.05). General category 3: groups 1 and 3 (p < 0.03), 1 and 4 (p < 0.05)
 
 
WORK-LOAD
70% of the patients mention that they have been stressed by having had a lot of responsibility and a heavy workload. The three categories; high level of responsibility in childhood, heavy work-burden in adulthood, and an experience of being burnt out, is combined in a general category called “heavy work-load”
 
Tabel 2.
Work-load and type of complaint
The number of times one or more of the categories are mentioned, is illustrated in median and interquartile range:
   1. Well-defined complaints
(N = 26)
2. Combination of well-defined and vague complaints
 (N= 30)
 3. Unspecific complaints
(N=58)
 4. Mental / Psychological complaints
(N=22)
Heavy work load 1.5
(0.00 - 4.00)
1.5
(0.00 – 4.25)
2.0
(1.00 - 4.00)
1.0
(0.00 - 3.00)
 
In the above general category for heavy workload, the patient groups have been examined for all combinations. 68% of those patients who describe themselves as being “burnt-out” belong in the group of unspecific complaints. The patients with unspecific complaints differ from the other groups by scoring higher on the heavy workload general category, examined both by dichotomized numbers, and by quantitative numbers. The group with mental / psychological complaints, differs from the other groups by mentioning a significant lower number of categories than the patients with unspecific complaints.
Dichotomized estimate: General category 4: groups 1,2,3 and 4 (p < 0.03), 2 and 3 (p < 0.02),  3 and 4 (p < 0.02).
                      Quantity estimate: Groups 3 and 4 (p < 0.03).
 
CAUSAL UNDERSTANDING AND COHERENT LIFE-STORY
Causal understanding was defined as those points in the life-stories where two different categories are connected to one another. In all four groups:
                      40% correlate two psychological categories
                      19% correlate experience of stress with actual mental condition
                      16% correlate physical complaints with actual mental condition
These three categories for correlation have been combined in a general category, labelled “causal understanding.”
 
Tabel 3.
Causal understanding and type of complaint
The number of times the patients mention one or more of the categories for causal understanding is given by the median and interquartile ranges for the general category and by the amount and percentages for the individual categories.
 
   1. Well-defined complaints
(N = 26)
2. Combination of well-defined and vague complaints
 (N= 30)
 3. Unspecific complaints
(N=58)
 4. Mental / Psychological complaints
(N=22)
Causal understanding        1
(0 – 3)
2
(0 – 3)
1
(0 – 3)
1
(0 – 3)
 
Correlation between stressful experience and actual physical condition 4
15%
 
4
13%
 
11
19%
 
8
36%
 
Correlation between physical complaint and actual mental condition 4
15%
4
13%
11
19%
3
13%
Other types of psychological insight 13
50%
8
26%
22
37%
14
64%
 
Wish for psychological help 9
35%
8
27%
14
24%
10
46%
 
 
The patient group with mental/psychological complaints (4), reveal the highest incidence of causal understanding while the groups 2 and 3, with unspecific complaints, reveal the lowest

Dichotomized estimate: Groups 1, 2, 3 and 4 (p < 0.05), 3 and 4 (p < 0.04), 2 and 4 (p < 0.008)
 
The form of the life-stories was examined. If coherence between the individual categories was found in more than half of the life-story, the story has been categorized as coherent.
 
Tabel 4.
Coherence of life-story and type of complaint
Amount and percentage of patients that reveal a coherent life-story:
 
   1. Well-defined complaints
(N = 26)
2. Combination of well-defined and vague complaints
 (N= 30)
 3. Unspecific complaints
(N=58)
 4. Mental / Psychological complaints
(N=22)
Coherent life-story 9
34%
7
23%
9
15%
12
55%
 
The group with unspecific complaints, reveal the least coherent, and most fragmented life-stories, whereas the group with mental problems have the most coherent life-stories.

Dichotomized estimate: groups 1,2,3 and 4 (p < 0.005 ), 3 and 4 (p < 0.001), 2 and 4 (p < 0.04)
 
 
SELF PERCEPTION
 
Tabel 5.
Negative self perception and type of complaint
Amount shown as a percentage that reveals a negative self-perception
 
   1. Well-defined complaints
(N = 26)
2. Combination of well-defined and vague complaints
 (N= 30)
 3. Unspecific complaints
(N=58)
 4. Mental / Psychological complaints
(N=22)
Negative
Self- perception
7
27%
16
53%
32
55%
17
77%
 
 
53 % of all life-stories contain a category with a negative self-perception. The group with specific complaints presents the least negative self- perception, whereas the group with mental / psychological problems presents the most negative self-perception. The group with unspecific complaints has a more negative self- perception than the group with well-defined complaints.

Dichotomized estimate: groups 1,2,3 and 4 (p < 0.006), 1 and 3 (p < 0.02), 1 and 2 (p < 0.05), 1 and 4 (p < 0.001)
 
USER SATISFACTION AND REQUIREMENT FOR RETIREMENT AND PENSION
59 % of the patients have described their dissatisfaction with sentences like: ”not very helpful”, ”did not work at all” in relation to the following categories:
            General Practitioner 14%
            Health System 36%
            Psychologist 5%
            Social services 33%
            Work 3%
            Friends and Family 6%
            Rehabilitation centre 16%, fellow participants 1%
 
Tabel 6.
Dissatisfaction and type of complaint
These nine categories have been brought together in a general category, labelled “patient dissatisfaction”.  The number of times the patients mention one or more of the categories is in the median and interquartile range.
                                   
   1. Well-defined complaints.
(N = 26)
2. Combination of well-defined and vague complaints
 (N= 30)
 3. Unspecific complaints: The new disease
(N=58)
 4. Mental / Psychological complaints
(N=22)
Patient
Dissatisfaction
0.0
(0.00 – 1.00)
1.5
(0.00 - 2.00)
1.0
(1.00 - 2.00)
1.5
(0.00 - 2.00)
 
Patient groups 2 and 3, are significantly more dissatisfied than the other two groups.
            Dichotomized estimate: groups 1, 2 and 3 (p < 0.03), 1 and 2 (p < 0.01)
 
Tabel 7.
Requirement of retirement for pension and type of complaint
Numbers as a percentage that express a wish for early retirement.
 
   1. Well-defined complaints.
(N = 26)
2. Combination of well-defined and vague complaints
 (N= 30)
 3. Unspecific complaints
(N=58)
 4. Mental / Psychological complaints
(N=22)
Wish
for pension
7
27%
13
43%
34
59%
4
18%
 
56% would like retirement for pension. Among the group with mental complaints, the wish for pension/early retirement is the lowest, and among the group with unspecific complaints the wish is the highest.

Dichotomized estimate: Groups 3 and 4 (p < 0.01), 1 and 4 (p < 0.04)
 
                     
DISCUSSION
Resume
Overall, the life-stories from the participants at the Rehabilitation Centre were characterized by experiences of stress in both childhood and adulthood. The groups with unspecific complaints and with mental/psychological complaints did not differ significantly from each other as regard to amount of perceived stress. Compared to the two other groups, however, they mentioned significantly more stressful experiences, particularly in childhood. Concerning stressful work related experiences, the patients with unspecific complaints differed from the other groups in that they experienced a significant higher level of work-load. The group with unspecific complaints wrote the must incoherent life-stories, whereas the group with mental / psychological problems, wrote the most coherent stories. The group with unspecific complaints revealed a more negative self-perception compared with the group with well-defined complaints, however, not as negative as the group with mental / psychological problems. The latter was the least likely to ask for retirement and pension. The group with unspecific complaints revealed the highest wish for pension and was the most dissatisfied group.
                     
These results should be taken with a grain of salt. The material is not necessarily representative for the big and varied group of patients with “unexplained medical complaints”. We have named our study a “natural study” because it reflects the situation on a rehabilitation centre with patients of many illnesses. Our intention was to give a more detailed picture of the patients own perception of their life and to examine if they themselves perceive the etiology of their illness.

The quantitative and qualitative analysis of these self-presentations is not compared with the patients “objective” medical and social situation, due to phenomenological position to convey and recognize the patient experience as valid in itself.

Although the life stories are “first persons” self-presentations they do reflect the context in which they are written. A story always has a sender and a receiver even it is hidden in an internal dialogue of the writer. And although the life stories were written for the patients itself and not intended to be read by others, they did have the potential of being discussed with the professionals at the rehabilitation centre and therefore did have a message.

A traditional qualitative analysis has not been applied as e.g. described in the method of grounded theories, but has consisted of a systematic reading and recording of units of meaning with the intention to examine hypothesis already given. The large number of life stories gave us an upportunity to combine the method of ”inductive narrative analyses” with a quantitative method. Even it is not consistent with evidence based medicine the combination of qualitative and quantitative methods are recommended suited to test medical hypothesis (Pope & Mays 1995).
 
With these reservations our study do give an empirical supplement to the battleground between professionals and laypersons viewpoints on the understanding of the clientele of unexplained medical complaints.

To be a patient at a rehabilitation centre is to be situated in a context where the recognition of the validity of the symptoms is a more or less hidden agenda for them. Attributions about the causes of an illness or its symptoms are important in determining a patient’s response to the illness (Sensky et al. 1996). Patients with functional illnesses as chronic fatigue syndrome often attribute their illness to physical causes and minimize psychological or personal contributions (Powell et al. 1990, Schweitzer et al. 1993, Butler et al. 2001). Our study supports that patients situated at a rehabilitation centre do give stress and  workload high priority in their perception of apprehension of their illness rather than physical and medical causes.

We hope that this might be recognized in the debate where patients with unexplained medical symptoms do have the not very respectable concept of “new age disease” and where the focus sometimes are more on minor characteristics of somatoforme patients as e.g. their dissatisfaction, low self esteem and wish for pension and retirement rather on their burdensome general life experiences.
 
 
Acknowledgement:
We thank dr. Finn Jacobsen for initiation the study and dr. Tom Teasedale for helping us with the statistical analysis.

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