Family Practice Vol. 16, No. 5, 515-521
© Oxford University Press 1999
The impact of patients' influence on recovery in a group of patients with dyspepsia
Department of Public Health and Clinical Medicine, Family Medicine, Umeå University, SE-901 85 UMEÅ, Sweden.
Nilsson B and Westman G. The impact of patients' influence on recovery in a group of patients with dyspepsia.Family Practice 1999; 16:515–521.
Received 11 June 1998; Revised 29 March 1999; Accepted 13 May 1999.
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Abstract |
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Background. The approach to health and disease can either be salutogenic (origins of health) or pathogenic (disease causing), which thus makes recovery a concept featuring several different angles. Antonovsky, with his concept of salutogenesis, tried to reach a more complete understanding of its favourable effects on health.
Objective. We aimed to investigate, understand and learn from the experiences of a small group of patients about factors leading to recovery.
Methods.A qualitative approach was used to explore patient experiences. One semi-structured interview was conducted by one of the authors (BN) with each of the 18 patients suffering from dyspepsia who had been investigated by means of gastroscopy at a university hospital clinic 12–15 years previously. The interviews were recorded either in written notes composed directly after the interviews or tape-recorded and subsequently transcribed. A modified form of grounded theory according to Strauss-Corbin was used to analyse the data.
Results. A pattern featuring five types of patients' influence on their lives was discerned, ranging from "a sense of no possibility of having an influence on existence/life" to "having influence". Strategies used by patients to maintain health could be categorized into four types: "extremists", "oscillators", "leapers" and "full-scalers".
Conclusions.Listening to patients who had experiences with dyspepsia brought patient influence on their own lives and on the care process into focus. We consider that there might be a link between patients having an influence on their lives and their being healthy today. In clinical practice, patient recovery and health promotion could gain from a perspective where patient influence is treated with esteem and emphasized in the consultation. In the future, research design could benefit from taking patient influence on the care process into consideration. However, no causal linkage between patient influence and patient outcome was established in this study. In order to do that, studies with quantitative design should be undertaken in the future.
Keywords. Dyspepsia, health, patient influence, recovery.
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Introduction |
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TopAbstractIntroductionAim of the studyMethods and patientsFindingsDiscussionConclusionReferences |
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Recovery is a concept featuring several angles of approach. From a strict medical point of view, surgical, medical or drug treatment are the most distinctive traits for recovery. Another way of addressing this issue is from the perspective of seeing recovery as a process in which factors like autonomy, development and maturity are of fundamental importance. The approach to health and disease can either be salutogenic (origins of health) or pathogenic (disease-causing). With his concept of salutogenesis, Antonovsky,1 a medical sociologist, tried to reach a more complete understanding of the favourable impacts on health, and he related this to a sense of coherence (SOC) in our existence. His experiences of some women, who were doing well despite having been incarcerated in Nazi concentration camps, helped him conceptualize his model. Three central components form SOC: comprehensibility, manageability and meaningfulness, the latter of which Antonovsky claimed to be the most important. Factors identified in the salutogenic model as generalized resistance resources (GRRs) include money, strength of the ego, cultural stability and religion, all of which provide energy and are important to activate when combating various stressors.
Dyspepsia is a common clinical symptom. A Swedish study2 reveals its prevalence in 32% of an unselected population and a broad definition3 includes upper abdominal pain, discomfort, heartburn, vomiting or other symptoms related to the proximal alimentary tract.
We have chosen to investigate patients with dyspepsia since it is a common and recurrent reason for people's consultations in primary care, often leading to hospital examination, medication and sick leave. Some patients recover while others do not. What are the determinants of recovery? In Sweden, hospital medical records allow for follow-up studies over long periods of time. In order to study enduring recovery and not accidental ones, we considered a long-term (12–15 years) follow-up to be preferable. All patients were examined by means of gastroscopy.
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Aim of the study |
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TopAbstractIntroductionAim of the studyMethods and patientsFindingsDiscussionConclusionReferences |
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The aim of the study was to investigate, understand and learn from the experiences of a small group of patients about factors leading to recovery.
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Methods and patients |
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Study design
We were looking for a deeper understanding of the patients' perspective on recovery. We used the clinical setting as the framework for the study, as outlined by Kvale.4 The study is exploratory, i.e. patients were recruited and interviewed until redundancy and the design emerged as the research process proceeded, in accordance with Lincoln and Guba.5 The recruitment of patients was strategic, i.e. patients of different sex, social status, living conditions and age were invited to participate. Data is based on one interview as described by Kvale4 and Lee.6 The interview was combined with a physician's examination (not reported here). The patients classified themselves as belonging to one of three possible categories of health and disease at the time of the interview: still "stricken with dyspepsia", burdened with "new diseases or disorders" or "recovered".
Data collection
The semi-structured interviews were carried out by one of the authors (BN). They concerned the patient's view of his or her life situation at the first appearance of dyspepsia and the measures taken by the patient to overcome the disease, their classification of themselves into one of the three categories at the time of the interview, their experiences of earlier consultations and treatments, and life events of importance for recovery or maintaining good health. Open-ended questions were used in the interviews, such as "What do you think are the grounds for your recovery?".
The first 12 interviews (seven men and five women) were recorded using memoranda and transcripts. For the remaining six interviews (five men and one woman), we used taped recordings and transcripts.
Patients
We selected patients from a hospital register listing patients with dyspepsia who were investigated by means of gastroscopy and found not to be suffering from a stomach ulcer. These patients were examined at the hospital in the years 1975–1977, and the criterion for gastroscopy was based on an agreement between family physicians in the Umeå Health Care District and the Department of Internal Medicine at the University Hospital in Umeå. Patients who did not respond to ordinary treatment (repeated consultations and pharmaceutical treatments with antiacid and anticolinetic drugs for 2–4 weeks) were referred to the hospital for gastroscopy.
We initially selected patients born on the first to the sixth day of each month from the hospital records, in order to acquire a sample of patients covering all months of the year. As the exploratory qualitative approach of our study became established, this "all-year-around strategy" was of less interest, eventually abandoned in favour of theoretical and empirical redundancy (see under "Study Design", Lincoln and Guba5).
In all, 39 patients were primarily identified in the register. Four of these patients were deceased. Eleven of them had left the northern region and, due to long distances, there was no possibility of interviewing these patients. In the end, 24 patients proved eligible for interviewing, though the study stopped at 18 patient interviews (12 men and 6 women) since we were not striving for representativeness but rather data and theoretical redundancy.5 From a quantitative perspective, six patients (five men and one woman) were drop-outs. For our qualitative-hypothesis-generating study, no efforts were made at including these patients in the study.
Most of the patients in the study were working class, but some were employed in the public service sector, including a nurse, a pharmaceutical technician and a teacher. Three were retired. Only one man and one woman had pursued post-secondary education, while seven men and four women had completed their compulsory schooling. The age range for the men was 39–69 years and for the women 39–70 years. For all the patients, the gastroscopy was normal and no patient suffered from stomach ulcer at the time of the study.
Process of analysis
The transcriptions of the six interviews and the 12 memoranda were read and re-read by one of the authors and discussed thoroughly with the co-author on an ongoing basis. Analysis and collection of data were pursued concurrently, yielding thoughts about the meanings of patients' statements.7 Sentences from the different transcriptions were written on cards in order to find codes. Several renewed readings of the transcriptions were made and therewith further sentences were found for the cards. The codes were then organized into different categories, each category as distinct as possible. The categories were then analysed in relation to one another, looking for connections, dependability or functional interrelations. Codes, categories and interrelations were then summarized into one unifying and comprehensive concept for the entire phenomenon under study—the core category influence.
After the data analysis was completed, the patients' own classification of their respective states of health and disease was used by way of comparison (see Table 1
).
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Findings |
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Five types of influence
In all the patients, a feature was discerned whereby the patients' influence on their own lives seemed to be linked directly or indirectly to their being healthy today. Five categories or types of influence were identified.
These types were as follows.
- (i) Sense of no possibility of having any influence on existence/life
(ii) Influence by avoidance or going to extremes
(iii) Problem-solving brought on by external changes
(iv) More pronounced reflection on one's earlier way of living
(v) Sense of having influence over one's life in one's own hands.
(i) Sense of no possibility of having any influence on existence/life
Patient: "I expect nothing from the company physician. They regard me as a malingerer. A lot could have been arranged by day if there had been a will. I am forgotten. Nobody has asked for me when I have been on sick-leave." (Male)
Patient: "I have been given Tagamet (medicine) and I have taken a cure this autumn and I think it helps me." (Male)
In this type, the patients did not seem to have been listened to, understood or respected, nor had they listened to themselves or to their bodies. They were not able to express themselves explicitly but seemed totally dependent on the physician. The patients gave an impression of standing outside of themselves, not taking an active part, which could also explain a pronounced trust in medicines and authorities. A sense of being stigmatized was expressed, along with a belief that there existed factors over which they had no influence and which had made them ill. There was nothing they could do but be submissive.
One of the patients had had an extremely harsh childhood. His mother's death left him and his many siblings either in a foster home or in the care of a housekeeper. His grandmother told him that she prayed to God to let him die, since she thought this would be the best for him. Thus as a child he was not loved or seen, nor had he been since. Anxiety at being left out has compelled him to obey authorities at his workplace. He received no help for his continuing stomach problems, and later on, experiencing increasingly more problems with his heart, neither the company physician nor other physicians paid him any heed.
Patient: "You had to be efficient and hard working, otherwise you were not allowed to be there. We dashed to the barracks to eat and then dashed back again. The company physician was unwilling to listen to me. One day I collapsed at work and I was taken to the heart intensive care unit. Since then I have not worked." (Male)
(ii) Influence by avoidance or going to extremes
In this type, the patients tried to avoid what was considered hazardous for them and their stomach problems. Another way of trying to acquire influence was by going to extremes when an earlier course of action was challenged, which might have inhibited a better settlement since the solutions arrived at were more prohibiting and diminishing than enhancing.
Patient: "If you don't work too much, and you don't stress too much, that is what it is all about." (Male)
Patient: "I don't trust medicine at all." (Male)
Patient: "I . . . I am hardened and I don't become absorbed." (Female)
(iii) Problem solving brought on by external changes
Patient: "I dare say that I have tried to grasp these problems. There you have the next problem." (Male)
In this type, the problems were settled in a technical way, not interpreted as providing experiences from which there might be something to learn. Along the same lines, these patients were trying to take care of themselves in a somatic way. A lack of congruency between their internal image of themselves and that of the external person could be expressed as a sign of this.
Patient: "I have been a new person after the surgical operation on my stomach." (Female)
Patient: "They have changed the organisation at my job, so it has been better (i.e. at work)." (Male)
Patient: "I want to be sick-listed in order to have a legal reason to say no to work." (Self-employed male)
Patient: "When you treat the body like this it will be that way. Too much medicine. My stomach is beat. We often shovelled down our food in five minutes . . . Perhaps I don't feel as well as I look." (Male)
(iv) More pronounced reflection on one's earlier way of living
In the fourth type, the extent of the patients' own responsibility and influence was not entirely integrated, even if a struggle to be trusting in oneself was apprehended. When reflecting upon their earlier lives, they noticed that they did not call them into question. Pronounced reflection on an earlier way of living or that their jobs had dominated their lives to far too great an extent was apparent.
Patient: "Life has only been work. Thought that if I could achieve some things it would be all right. But it's not so!" (Male)
Patient: "In the old days, nobody called into question that a house should be built within a given timeframe." (Male)
Patient: "Workers like that don't exist anymore and afterwards you can wonder if it was good to set up like that." (Male)
Patient: "The team leader and the foreman chose the workers. The team kept together in order to be up to the mark. I wanted to be where one could earn money. I remember one man who was expelled from the team. I think of him often nowadays. At that time I did not have the ability to cut myself loose even if I did not like my job." (Male)
(v) Sense of having influence over one's life in one's own hands
Patient: "When I had to quit my job six years ago it was a question of what I wanted to do with the rest of my life. I liked my previous job, but it did not give me anything. Now I have a job with variety, which moreover provides me with a good social fellowship . . . I have learnt to respect people in another way and understand that everybody has value. In a lot of ways they are cleverer than we (a reference to the mentally retarded) . . . The important thing is that you like life. If you do, then you will manage any ailment." (Male)
Patients of this last type had learnt how to have an influence over their lives regardless of whatever came their way. They had learnt this from hard experience and did not dwell on it. An ability to see something constructive in everything was discerned at the same time as a positive outlook on pleasurable things was developed. Heavy losses or difficulties were interpreted as turning points, a new era in their lives. They showed respect for other peoples' autonomy. They changed jobs in order to take more responsibility for their children. They had noticed coherence and a pattern in life. These patients welcomed life as it came, which is quite different from philosophies such as "There you have the next problem", which despite its apparent similarity has a quite different meaning.
Patient: "I take life as it comes to me . . . All the pieces fit together." (Female)
Previously, these patients may have been silent and submissive but they had learnt to set limits. Having a sense of humour was also typical. Creativity was important for them in their work. They did not blindly obey authority and did not blame others when they experienced problems or difficulties. They knew what was important in life for them, without regard for the opinions of other people. Existential thoughts were essential and of vital interest to them.
Patient: "Life has taught me a lot. I don't want to have it undone." (Male)
Patient: "I was sick-listed (high blood pressure) and ordered to go home and take it easy and I did. The passivity almost made me kill myself and I have taken a little of the medicine for the high blood pressure and felt so damned sick.
[W]hen I came to the rest home, the doctor told me to throw the medicine away in order to see what would happen. And in a fortnight I had the normal values, so I am very grateful for that stay.
The food there I don't praise, but the instruction about learning how one could influence one's well being. That is something incredible." (Male)
Types of strategies
When viewing Table l, a distribution pattern emerges, possible to categorize according to four different strategies.
(1) "Extremists".. Some patients seemed to be pronounced "extremists", i.e. possessing a palpable sense of having no possible influence or of ever belonging to the type who have influence over their lives in their own hands (patients numbers 1, 2 and 12).
(2) "Oscillators".. Others had their main points in two types, oscillating between them and trying to take the next step. The "oscillators" try to get their bearings but are not prepared to take the next fateful step (patients numbers 3, 8, 9, 14 and 15).
(3) "Leapers".. In some cases a leap was seen between the five different types. In some circumstances these patients could act in a more influential manner than in others. The "leapers" problem is to transfer the experience of having influence from one area of their life to another (patients numbers 6 and 17).
(4) "Full-scalers". . In one case, the patient had an even distribution among the majority of the five types (patient number 5).
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Discussion |
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TopAbstractIntroductionAim of the studyMethods and patientsFindingsDiscussionConclusionReferences |
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Main findings
As seen in Table 1
, we have found different levels of how patients estimated their influence over their lives and that they developed different strategies in order to adapt to their levels of influence. Having a sense of influence over one's life can also include being able to have an influence on encounters with care-givers and on adequate treatment.
Credibility of the study
The retrospective design has its drawbacks. When reflecting upon a 12–15-year period, certain specific events are difficult to remember. However, the events being searched for are associated with medication and hospital treatments, i.e. individual meaningful events. These are the events looked for in a qualitative study. It is the patients' view, subjective memories and personal experiences which have to be listened to and understood, and not objective facts of the "true circumstances" of the time in question. Thus the statement "The company physician was unwilling to listen to me. One day I collapsed at work and I was taken to the heart intensive care unit. Since then I have not worked" is not taken as a confounding factor concerning casual linkage about how different factors effect health and disease, but rather as a patient's utterance interpreted as a sign of dependency and victimization, and not having influence over their life.
In order to study an enduring recovery, and not an accidental one, we considered a long-term follow-up to be preferable. A long observation period can afford greater clarity and avoid difficulties in classification regarding recovered, remaining ill or new diseases.
The method used in this study is grounded theory.4 As data collection is a process, an emergent design was essential,5 which is why the last six interviews were taped. Although different methods of collecting data were used, a similar pattern emerged regarding levels of influence on life as well as strategies used by patients (Table l). The findings are grounded in the data, and excerpts from the interviews are shown. By reading the transcriptions over and over again, categories began to emerge. The data were telling and after all the readings were completed, the impact of influence manifested itself almost in a flash.
Whether an informant should be interviewed just once or on several occasions is a matter of opinion. It is well known that a stranger can often elicit more intimate details about someone's life than a more closely related person.6 The ethical considerations are of great importance, since methodological choices are often ethical in nature8 and interlaced with the role conflict of the care provider. In this study, the interviewer deliberately chose to conduct only one interview in order not to act or to be looked upon, consciously or unconsciously, as a social worker, but rather as a researcher.
Concepts and definitions
When scrutinizing the word ‘influence’, the basic meaning of its root ‘flue’ is expansion outwards and inwards; it is dynamic and open, which indicates the existence of a developing potential. Estimating the strengths of a person is difficult; medicine is not the only discipline which finds it easier to define weaknesses than strengths. There is a suggestion that this could be due to the fact that pathology carries a more specific vocabulary than health.9
Relation to similar studies
Patient influence in treatment is not frequently studied, even if it is sometimes featured as a component in larger studies.10 Incorporating patients' participation by encouraging them to ask questions has been suggested.11 Enhancing the patients' influence over recovery is another thing altogether, since participation does not necessarily mean that the patient has ‘influence’. The locus of control is a concept that has been studied and documented for decades12 and where different scales have been developed.13 The concept of control can have the side-effect of being locked and rigid. When surveying the literature for studies of locus of control and stomach problems we have found very few. A study of locus of control in children and adolescents with inflammatory bowel disease14 shows that those with IBD had a more external locus of control than matched groups, a result corresponding to our findings. Moreover, we have not found any studies using the salutogenic model in patients with different stomach problems.
In a follow-up study, it is shown that independent of consultation behaviour, 13% became symptom-free each year.15 Over half of those who had reported dyspepsia before, but not at the time of a baseline survey, had experienced a recurrence of their symptoms. These findings agree with our data. Only a few of our patients had achieved freedom from all old or new symptoms.
It is striking how several men called their earlier way of working in question by concluding that they had been too loyal to the system at their jobs. A study of norm systems in transition supports this observation.16
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Conclusion |
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Riessman17 says that methods are like maps and that different maps make certain features visible and obscure others. The transferability18 of this study is for its readers to determine. Our findings apply to the patients in the study and their living conditions and it does not mean that most patients with dyspepsia have no influence over their lives. Our study aimed at generating new hypotheses regarding how patients recover from dyspepsia. These hypotheses must be confirmed in quantitatively designed studies. We do believe, however, that the patients have taught us that recovery and health promotion could gain by applying a perspective wherein patient influence is held in esteem and emphasized in the consultation,19 and that looking for the origins of health1 can be put into practice. As an example, a patient belonging to the ‘oscillator’ or ‘leaper’ category could be helped to discover how he or she influences some part of his or her life, and it is possible to transfer this experience of having influence to other fields.
Our study illustrates how much information a patient can provide in one single encounter. Indeed, there is an exceptional potential in every health care consultation.20–21 Gender differences also emerged in our study. In the future, research design can be developed where aspects of patient's influence on the care process can be taken into consideration and evaluated in relation to gender and patient outcome and the evaluation of care.
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References |
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