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- SUBJECTS AND METHODS
- AUTHOR CONTRIBUTIONS
The individual prognosis of ankylosing spondylitis (AS) is uncertain (1). Moreover, the disease course is unpredictable, including periods of partial remission and disease flares marked by overwhelming fatigue, incapacitating pain, and crippling immobility (2). Also, day-to-day symptom fluctuations are reported (3). The present study examines how illness fluctuations interfere with everyday life.
In patients with other chronic diseases, illness has been reported to disrupt people's biography and everyday lives at home, work, and leisure time, as well as to influence self-concept and ideas about the future (4–10). However, chronic illnesses may also include positive aspects like developing new meaningful lives, creating new opportunities, self-development, and control over everyday life (5, 11–13). It became obvious that what the respondents did in everyday life could be interpreted in terms of reversing symptoms and normalizing everyday life situations. Therefore, the concept of recovery became central to the data analysis and interpretation. The ASsessment in Ankylosing Spondylitis group has decided to evaluate recovery as an outcome in terms of normalization of symptoms, spinal mobility, and performance of standardized everyday tasks (14). However, the recovery process literature inspired the data analysis (5, 13, 15). This literature emphasizes the individual in recovery, and how the individual uses available resources to restore or create new meaningful ways of living. Such processes can be understood as personal journeys comprising complex dialectic relational processes between the individual and their ways of managing different social situations and contexts (16). A metaphor used by one of the respondents also became important in understanding the complexity of living with AS: “Life with AS is like being in a spider's web. You can't get out, but there are many roads you can choose for making the best of it. It's important to find the right road. Many roads lead to Rome, but I have to find the one that suits me. You have to keep your balance so the threads don't give way, because then they have to be tied together again. Then the web gets tighter and there aren't so many roads. It's like balancing on a knife edge.”
The aim of this study was to examine the relationships between illnesses and how people with AS adapt to everyday life situations.
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- SUBJECTS AND METHODS
- AUTHOR CONTRIBUTIONS
Three different conditions related to living with AS were identified: ordinary life, slowed-down life, and disrupted life. During ordinary and slowed-down life, the increased discomfort was prevented or reversed by adapting everyday activities and environment. During the disrupted life period, intense, inexplicable, and unmanageable pain that could not be reversed by one's own actions prevented all or most ordinary activity.
Achieving a normal life has been found to be the preferred outcome among people with rheumatoid arthritis (20–22). What the respondents did in different conditions and everyday life situations can be understood as a process to normalize their symptoms and everyday life. However, normal life can be understood in several ways. Cultural normalcy is related to inherited explicit and implicit sets of shared rules and ideas within a society that tell us how to view, experience, and behave in relation to other people and the environment (23). In Western societies, the importance of work and taking responsibility for one's own health through physical exercise is strongly emphasized. The respondents conformed to this view by stressing the importance of work and exercise. The respondents who worked did not talk very much about home and family life. The pensioners, however, provided detailed information on home and family life and exercise. Their home and leisure activities are also in conformity with the cultural norms of the society. In other words, what the respondents considered important and meaningful was in line with cultural norms, but their lives could still differ from their prior normal life.
According to the recovery process literature, the concept of normalcy relates to what each individual thinks is an acceptable and meaningful life (5, 13). Normalcy for the individual is changeable, situational, and contextual (24). One aspect of individual normalcy is related to what life was like before the disease compared with what it is like with the disease. In this study, symptoms and everyday life varied in different degrees and ways from what they had been before the respondent developed AS. However, I found that the respondents had become used to these changes. The ordinary life condition can therefore be understood as a description of redefined normalcy. However, it was also clear that this normalcy was constantly threatened, and the complex adjustments they made during ordinary and slowed-down life can be interpreted as ways of protecting their redefined normal life. The respondents were continuously on guard to detect changes in body sensations, and often managed through their own actions to reverse symptoms and maintain normalcy when stiffness and tiredness became worse. In contrast, during episodes of inexplicable and unmanageable pain, the sensations could not be reversed by their own actions and both their bodies and their everyday lives went out of control (9, 25). One could say that their life's normalcy fell to pieces.
An unfamiliar body beyond one's own control can be described as an assault on our being in the world (23). The respondents' descriptions of ordinary and slowed-down life conditions show how they had made situations comprehensible and manageable, and in some way kept control over their body and life situation. In contrast, during disrupted life condition, the body and life situation were beyond the respondents' own control. The situation was also incomprehensible and unmanageable. Antonovsky has shown that comprehensibility and manageability of life conditions are important in developing a sense of coherence between self and life situations (26). Osborn and Smith have pointed out that having chronic unmanageable back pain separates body from self (27). My findings also suggest that inexplicable pain separates people from normal life.
Self-management denotes any self-initiated, self-directing action in everyday life activities to preserve physical, social, and emotional wellness (28). The present study shows how self-management in the form of adjustment to and of the environment is incorporated into everyday life activities. Other forms of self-management included seeking help from health professionals or waiting for recovery to occur. In the disrupted life condition, some respondents accepted that they had to wait, and in the meantime they used painkillers and physiotherapy to endure the pain. But others were less certain that this was the right thing to do. They wondered whether the symptoms reflected disease progression that could only be stopped or slowed down by medical treatment. Therefore, when their symptoms could not be explained by factors like weather, overexertion, or food intolerance, they felt they needed a medical explanation.
The degree of trustworthiness of a study reflects the degree of confidence in the credibility of data and their interpretations (17). Because the researcher is the instrument for obtaining, analyzing, and interpreting the data, the researcher's reflexivity concerning how preconceptions shape the analytic and interpretation processes is important. Although insight is needed for interviewing and interpretation, it can also limit the ability to identify new perspectives and interpretations. I believe that my clinical experience as a physiotherapist and my knowledge of disease, illness, and recovery from medical (29, 30) and sociological perspectives (31, 32) enhanced my reflexivity during the research process. Identifying the different levels of illness deepened my understanding of these conditions. However, one limitation of the analysis is that it was not validated by other researchers or the respondents.
In qualitative interviews, the respondents and the researcher are coproducers of data (33). In some interviews, it was difficult to perceive any coherence in the respondent's statements, whereas in others it was easy. After reading one confusing interview text several times, I reread all the texts in order to find out what made them easy or difficult to understand. It struck me that in the understandable interviews, the respondents talked to me as an experienced teacher talks to an uninformed student. In other interviews, the respondents spoke like students expressing unfinished thoughts to an experienced listener. Reading the transcripts again in this light, I was able to use the texts of the teachers to categorize those of the students under the 3 themes, and the students' texts helped me to perceive nuances in the information within each theme. This step became a means of critically assessing the findings of the analysis.
Individual, contextual, and situational data can be obtained through qualitative interviews, but the findings must be transferable to other people, situations, and contexts. One way to judge transferability is to examine variations in data. I found considerable variations within the categories, but did not identify any new categories during the last 3 interviews. Nevertheless, the data may not be exhaustive, and there are no prior studies that would clarify this. Another aspect of transferability is the heterogeneity of the sample. Because this sample is a clinical one, it seems likely that the findings can be transferred to clinical settings.
My findings suggest that living with AS consists of a continuous, lasting process of normalizing symptoms and everyday life. The respondents said that they had learned effective self-management by trial and error on their own, and they felt that health professionals should have facilitated this process. This suggests that important issues for patients are not incorporated into our professional body of knowledge, which is a challenge to both clinicians and researchers. This study could be used as a basis for development and evaluation of rehabilitation programs that take into account the relationships between particular everyday situations and the individual's skills, resources, and ability to meet challenges in everyday life. This would be in line with the ideals on which rehabilitation is based (34, 35).
By examining the relationships between symptoms and what people do to recover, 3 different life conditions were found: ordinary life, slowed-down life, and disrupted life. Living with AS requires a continuous but varying process of normalization of symptoms and everyday life situations within the framework of these 3 illness conditions.