http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–8 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.957789
RESEARCH PAPER
A thematic framework of illness narratives produced by stroke patients A. Pluta1,2, H. Ulatowska3, N. Gawron4, M. Sobanska4, and E. Lojek4 Institute of Physiology and Pathology of Hearing, Warsaw, Poland, 2World Hearing Centre, Nadarzyn, Poland, 3School of Behavioral and Brain Sciences, University of Texas at Dallas, Dallas, Texas, and 4Faculty of Psychology, University of Warsaw, Warsaw, Poland
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Abstract
Keywords
Purpose: The present study aims at elucidating the impact of stroke on psychosocial functioning of stroke survivors. Methods: Data were investigated using interpretative thematic analysis of illness stories produced by 29 patients. Results: Eight themes emerged from the data: Medical Information; Interpersonal Changes; Cognitive, Physical and Emotional Functioning; Strategies of Coping; Social Support; and Information Irrelevant to the Question. The most frequent organization of the themes followed the course of medical intervention and rehabilitation. Narrations of individual patients varied in terms of the presence of particular themes, the amount of information on each topic and organization. Conclusions: The results suggest that the analysis of non-guided illness narratives can be effectively used to identify the thematic areas important to individual stroke patients. The thematic content analysis of stroke stories can allow health professionals to better understand the patient’s state of knowledge related to illness as well as his or her socio-psychological functioning which may be useful in the course of planning further assessment and rehabilitation of patients with stroke.
Illness stories, psychosocial functioning, stroke, thematic framework History Received 25 August 2013 Revised 18 August 2014 Accepted 20 August 2014 Published online 8 September 2014
ä Implications for Rehabilitation
Experience of illness and life changes following stroke should be recognized as central to the provision of targeted rehabilitation. To understand the subjective perspective a content analysis of the content narrative is recommended. Our study highlights seven general thematic categories that may be regarded as key. The categories may be useful for clinicians to help individuals to clarify their main concerns following a stroke.
Introduction
Importance of term discourse and content analysis
Cerebral stroke not only constitutes a threat to an individual’s life but also damages his or her personal integrity. This illness usually implies an irreversible change in the patient’s life, in which the effects of the injury and related experiences require emotional and psychological integration into a shifted sense of identity [1]. Health professionals emphasize that listening to stories about illness not only allows them to understand the patient’s situation better but also enables them to learn about the patient’s approach to his or her own ailments and coping strategies [2–6]. Although illness narratives have been important in the study of personal experiences of patients for almost four decades [7], little is known about the thematic content of illness narratives produced by stroke patients. This article reports our examination of the content of stroke stories in order to introduce a framework for understanding the subjective experience of stroke.
The term discourse refers to a stream of language-related occurrences that take place in a situational context. The essence of discourse lies in the transfer of language that expresses a specific thought or subject directed at an interlocutor. It conveys information concerning cognitive, emotional and social functioning [8,9]. Neuropsychological changes after stroke constitute an interaction between pre-morbid cognitive and personality features and brain pathology. Therefore, learning about the patient’s subjective experiences may be the key to directing rehabilitation at higher brain functions and supporting the patient in coping with emotional problems [10–12]. This follows the first rule of neuropsychological rehabilitation [11], but the investigations on the educational potential of illness narratives revealed that patients still notice the lack of attention to personal experiences in medical institutions [13]. On the other hand, a number of studies have recognized the potential of illness stories for clinicians [14]. Narrative-based practice is considered also to be a complementary component to evidence-based practice [15,16]. Studies of discourse in people with brain injury provide important information concerning brain speech mechanisms [9],
Address for correspondence: Agnieszka Pluta, World Hearing Center, Mokra 17 Str., Kajetany 05-830 Nadarzyn, Poland. Tel: 48602850832. E-mail: [email protected]
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the patient’s psychophysical state and his or her coping strategies towards the illness [16,17]. Moreover, by listening to patients speak about their experience with illness, particularly their difficulties as well as their concepts of recovery, health professionals may gain insight on how to target rehabilitation that helps patients adjust and reach their goals, if possible [15,18,19]. Researchers of illness narratives have also emphasized the usefulness of the stories for the patients themselves [20]. The ill person needs to analyse the results of the illness, reconstruct his or her identity and impose order on his or her surroundings and new role in life [21]. It is claimed that telling stories about our lives is a crucial element of shaping a person’s identity, because illness narratives help define the social roles we played in the past, the roles we perform in the present and the goals we aspire to achieve [22]. By comparing personal experiences depicted in illness stories, patients may gain psychological support for emotional states that they share with other patients and learn about strategies for coping with the illness [6,23,24]. A content analysis of the narrative can therefore be a useful tool in understanding the patient’s subjective perspective [15]. Listening to patients’ stories might contribute to identifying key themes in illness narratives that may help clinicians understand the patients’ experiences and enrich their professional competence [25]. There is also a general agreement that patients should be given the opportunity to talk about their illness as well as their treatment, because this activity has a therapeutic effect [25,26]. Whilst the benefit of exploring patients’ narratives has been widely recognized [17,25,27–30], only a small number of studies have investigated the content of stories told by patients who have experienced a stroke. The majority of these studies applied structured or semi-structured interviews with pre-determined questions. For example, Nilsson, Jansson, & Norberg [31] focused mainly on patients’ experiences during their stay in hospital, their home-coming and their mental adaptation to the consequences of stroke. Martin and colleagues [32] probed individual experiences of cognitive, emotional and social difficulties after stroke with the use of the 63-item European Brain Injury Questionnaire [33]. The patients emphasized on depressive mood and cognitive difficulties as the main consequences of stroke. Martinsen et al. [34] interviewed stroke survivors aged 20–61 years and analyzed how stroke affected their relationships with family. Two main themes emerged: ‘‘struggling to re-enter the family’’ close to stroke onset and ‘‘screaming for acceptance’’ later. Younger patients mentioned being left by their partners, leaving their studies or their work and social isolation. Fathers in particular worried about their inability to fulfil their parental roles and elder patients struggled to maintain contact with friends [34]. Other stroke studies have examined narratives for factors that shape successful recovery [15], quality of life [17,35], occupational experience [36] or experience of the fundamentals of care [37]. Across these studies, several key themes appeared repeatedly, including change of life, stroke’s impact on emotions, personality, social roles and abilities. However, these studies did not allow patients to choose what to say about their illness. Only few studies analyse topics in unhampered narrations of stroke survivors [38]. Therefore, there is still a need to learn about the topics stroke survivors focus on, the prevalence and complexity of particular topics and their arrangement in an unconstrained narration. Hence, by using open-ended questions, refraining from any prompting and using qualitative analysis of narrative content, the authors of the present study aimed to gain a more comprehensive understanding of psychosocial functioning of stroke survivors elucidated from a patient-centred perspective.
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Methodology Objective The purpose of this study was to establish key themes and their order in the stories produced by patients who have experienced stroke. In order to identify these themes from the perspective of patients, the following research questions were posed: (1) What is the content of narratives produced by people with acquired brain injury after stroke? (2) What is the distribution and organization of the topics in these narratives? Subjects Nineteen patients with left hemisphere damage (LHD) and ten with right hemisphere damage (RHD) with focal lesions were recruited at the Centre for Neurological Rehabilitation in Konstancin-Jeziorna near Warsaw, Poland. All participants had suffered a single stroke. The aetiology of brain damage was established based on neurological data (CT or MRI). The participants had no history of previous neurological or psychiatric problems, alcohol or drug abuse or earlier instances of loss of consciousness. The standard neuropsychological assessment included selected trials from the Test Battery for the Cognitive Assessment of Patients with Brain Damage [39]. It is widely used in Poland tool which enables the qualitative evaluation of different aspects of language production and comprehension as well as general cognitive functioning encompassing; memory, praxia, gnosia. The results of the performance in each trial are presented descriptively therefore the whole neuropsychological evaluation was performed by the psychologist with considerable experience and competence to judge whether the patients’ performances represent brain related deficits. The severity of aphasia was also measured using the Polish version of the Aphasia Severity Rating Scale in the Boston Diagnostic Aphasia Examination [40]. This provides an 5-point scale for measuring qualitative aspects of speech. The inclusion criteria for the present study were as follows: adult, stroke, sufficient cognitive functioning to participate in the study (e.g. capacity to give informed consent) and the ability to comprehend speech and produce longer utterances. Participants required a minimum score of three (ability to discuss almost everyday problems with minor or no assistance) on the Aphasia Severity Rating Scale. The exclusion criteria were severe cognitive impairment confirmed in neuropsychological evaluation and psychiatric disorders diagnosed by a medical doctor. The patients’ ages ranged between 33 and 85 years (58 SD 12.7 years), and the duration of the illness varied between 6 months and 240 months (46 SD 54.5 months). The sample included 19 men and 10 women. Of these, 20 patients had secondary education, 6 had post-secondary education, and 3 had vocational education (13 SD 2.2 years). All patients were native speakers of Polish. Three aphasic patients scored 5 points, 14 scored 4 points, and 2 scored 3 points on the Aphasia Severity Rating Scale. In case of RHD patients, all scored 5 points. Among the LHD patients, some loss of fluency in speech, reference errors, perseverations and circumlocutions were apparent. However, all patients were able to construct long narratives about their illness without help. None of the patients failed to convey their ideas. Therefore, inference or guessing by the listener was not necessary. Procedure All testing procedures were conducted in a quiet room. The patients were informed about the aim and the procedure of the study and gave their informed consent. The research project was
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DOI: 10.3109/09638288.2014.957789
accepted by the Ethics Commission at the Faculty of Psychology, University of Warsaw. The study aimed to encourage the participants to create a narrative about their illness without prompting. Two questions were posed: (1) Can you tell me about your illness? (2) How has your life changed because of the illness? No additional guiding questions were asked during the patient’s narratives. The narrative was considered completed when the participant indicated that they had finished by uttering a closing statement, such as ‘‘That’s all,’’ or by no longer speaking. The narratives were recorded on a Dictaphone, and later the tape-recorded data were transcribed verbatim and identifying data were removed. The analysis was inspired by the qualitative content analysis performed in other studies of illness stories, such as those of patients with chronic pain [41] or patients with aphasia [42]. It entails eliciting narratives for identifying information relevant to quality of life or other predefined questions. The main idea of the analysis was to preserve the advantages of quantitative content analysis for more qualitative text interpretation. It enabled to fit the narrative into the situation of text production and socio-cultural background but also to analyze material following the structured rules. The rules of the analysis encompassed: inductive category development (to formulate them in terms of material), revision of the selected categories, analysis of reliability and validity of the categories, computing the frequencies of the selected categories in the narratives [43]. All aspects of the analysis are described in details below. Extracting the main topics of illness narrations The main procedural steps of the analysis involved: (a) indicating concepts representing different aspects of the patients’ experience of the illness, and (b) identifying main and recurring topics. We followed Braun and Clarke [44] approach to thematic analysis. Firstly, the authors become familiar with the data (through repeated reading) and identified the repeated pattern of thematic content. Secondly, the presence of these themes was systematically checked across each transcript. In this step of the analysis, the first author read transcripts several times to confirm the meaning of the texts. Then, the interview texts were divided into meaning units, i.e. sentences or paragraphs with the same thematic content. Next, two independent researchers (qualified clinical psychologists) read the narrative material independently in order to evaluate the appropriateness and reliability of the established thematic categories. The researchers were provided with a description of each category. Then, narrative material was presented in written form and the researchers were asked to code each section of the text for the themes (each category was assigned a number from one to eight). The principle aim of this stage of the analysis was to determine the degree of agreement between raters (provided in the Results below). In the second stage of the analysis, the proportion of propositions, defined as each clause with a verb and its arguments were counted. Propositions were also counted when a sentence was grammatically incorrect but provided meaningful information. Empty phrases (e.g. ‘‘you know,’’ ‘‘and so on’’) and semantic repetitions were excluded from the analysis.
Results The topic content of stroke narratives The analysis of the narratives showed that despite language impairments, all narratives constituted a consistent whole. The number of propositions in the narratives ranged from 15 to 169 (58 SD 39.4).
Stroke stories
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The first step in the analysis revealed several main topics around which patients built their propositions. These were divided into eight thematic categories. Medical information: medical descriptions of the illness, treatment and symptoms preceding the onset of illness, such as head pain, type of stroke and detailed description of medical screening (identified in 86% [n ¼ 25] of patients’ narratives); Strategies of coping with the illness: participating in neuropsychological therapy, using new cognitive strategies invented to cope with memory problems and engaging in moderate physical activity (identified in 75% [n ¼ 22] of patients’ narratives); Cognitive functioning: deficits in higher cognitive processes perceived by the patient, such as memory, language and attention (identified in 72% [n ¼ 21] of patients’ narratives); Interpersonal changes: referring to subjectively perceived changes in interpersonal contacts and living conditions due to the stroke, such as loss of friendship, loss of job and difficulties communicating with family members (identified in 62% [n ¼ 18] of patients’ narratives); Physical functioning: physical restrictions, such as paralysis and the inability to write or drive a car (identified in 62% [n ¼ 18] of patients’ narratives); Social support: support of relatives and friends such as financial support, emotional support, relatives’ engagement in rehabilitation (identified in 51% [n ¼ 15] of patients’ narratives); Emotional functioning: subjectively perceived emotional changes, such as loss of confidence, fear and emotional liability (identified in 41% [n ¼ 12] of patients’ narratives); Information irrelevant to the question: topics not relevant to the illness story, such as political affairs and personal remarks not relevant to the illness (occurred sporadically in 44% of narratives [n ¼ 13], but these irrelevant themes did not occur in a repetitive manner). Examples of utterances referring to these categories are presented in Table 1. The reliability analysis of inter-rater agreement (two independent researchers and the first author) revealed that Kendall’s W coefficient was high [W ¼ 0.922; chi2 (295) ¼ 815.617; p50.001]. This means that thematic categories were established appropriately and were easily identified from the meaning units. Variability among raters (when the raters did not agree on the category utterances should be assigned to) was observed in 22.2% of utterances (66 out of 297; in the remaining meaning of units the raters were unanimous). In case of discrepancies, we applied the solution established by other authors [45] and the category was assigned after mutual agreement was reached via discussion among researchers. The analysis of common themes revealed that patients’ narratives most frequently referred to medical information about their diagnosis and their subjective perceptions of interpersonal changes. Moreover, medical information comprised the most detailed and longest part of the narratives. Patients also talked a great deal about strategies of coping with the illness that were undertaken to regain health and cognitive abilities; cognitive difficulties; losses in social bonds and work; support of relatives and friends; and physical constraints. The smallest portion of the narratives referred to emotional changes. We identified this topic in the narratives of 9 out of 19 men and in 3 out of 10 women, which is 47% and 30% respectively. Men usually complained they had become impatient, impulsive, annoyed or angry more easily. They also admitted that they cried more frequently, that they felt down and lost interest in their usual activities. In contrast women emphasized the feeling of anxiety and unease.
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Table 1. Examples of utterances referring to identified thematic categories. Participants characteristics Examples
Age
Lesion site
Gender
‘‘. . . The carotid artery was blocked and that was the cause of stroke; an atheroma has simply come off . . .’’ ‘‘Only deaf tissue had left, left hemisphere is totally absent. It is . . . and that’s all. Someone has said that maybe after some time . . . because there is some blood flow. It is so-called compensatory circulation.’’ ‘‘I’m completely excluded from what I used to do.’’ ‘‘. . . You don’t have a family, or friends.’’ ‘‘. . . My whole world just collapsed. I had my own company and had to close it down.’’ ‘‘When somebody speaks to me, I don’t always understand, and that’s the worst.’’ ‘‘. . . When somebody speaks I understand everything, but I wasn’t able to say anything, somebody tried to get me to . . . , no, nothing, the worst was when . . . ah, terrible . . .’’ ‘‘I used to know numbers by heart, now I have to put those into mobile phone.’’ ‘‘. . . I still have problems with writing. I can’t hold a pen. I scribble, sign something.’’ ‘‘The car stays parked; I can’t drive.’’ ‘‘I’ve become unbearable at home; I used to be nice and polite and now I’m a completely different person; I cry at times.’’ ‘‘. . . I’m really nervous; I can’t find a place for myself; everything bothers me. I put something wrongly, and all of that makes me nervous . . .’’ ‘‘I’m so tearful now . . .’ I’m nervous’, ‘I’ve broken down’, ‘Life does not have purpose to me.’’ ‘‘I used to stay awaken alone till late and I used to learn to speed up whatever’’ (the patient meant speech rehabilitation). ‘‘I have been practicing memory through whole life, because when you put something into your head, it would stay there. It is not that way that something has melted in my head . . . Since I live, I will struggle. I have such a character. You have to live, not abnegate, because it is senseless.’’ ‘‘I am already over 65 and retired, so I think that the young are more affected by this illness. They can’t work. So it is harder for them to bear it. With me, it just happened. I didn’t expect this illness, but so be it.’’ ‘‘My family helps me.’’ They said: ‘‘We (the patient’s family) won’t leave you alone.’’ ‘‘Regarding experiences I was once at a trial with a lady which was my companion and when it finished we went to the downtown and had a meal together, I mean the lady and me.’’ ‘‘We met in a church. By that time my husband had already passed away and I was very confused and in despair, mourning and wearing black clothes as any widow would do.’’ ‘‘I didn’t smoke nor was I a heavy drinker at all. Oh dear, can I pour you out a little liquor?’’
60
RHD
F
20
5
R.B.
55
LHD
M
9
4
M.O.
58 60 54
RHD RHD LHD
M M M
1 4 0.5
5 4 5
P.A. K.P. S.T.
65
LHD
M
6
4
T.O.
55
LHD
F
7
3
J.W.
55
LHD
M
0.6
4
B.J.
54
LHD
M
0.6
4
S.T.
76 59
LHD RHD
M M
3 1
5 4
S.M. P.A.
55
LHD
M
7
4
J.W.
65
LHD
M
0.5
4
T.D.
40
LHD
F
1
4
B.D.
85
LHD
F
0.5
5
K.B.
66
RHD
F
0.5
5
B.K.
57 66
LHD LHD
M F
1 2
4 5
T.S. K.A.
57
LHD
M
1
4
T.S.
66
LHD
F
2
5
K.A
55
LHD
M
7
4
J.W.
Thematic category Medical information
Interpersonal changes
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Cognitive functioning
Physical functioning Emotional functioning
Coping strategies
Social support Information irrelevant to the question
Years post stroke
Severity rate
Initials
RHD-right hemisphere damage, LHD-left hemisphere damage; F-female, M-male.
The percentages of utterances in the indicated categories are presented in Figure 1. Organization of the stroke narratives An important feature of the stroke stories analyzed in this study was the organization of the information into a logical whole.
The organization of the topics described in the narratives clearly followed the course of the medical intervention, rehabilitation and, sometimes, progress in physical and cognitive recovery, revealing that patients had detailed knowledge about causal sequences and were able to narrate their story in an order consistent with the course of real events.
Stroke stories
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Figure 1. Percentage of proposition referring to identified categories (total number of propositions referring to the specific topic in all narratives divided by total number of propositions within the narratives).
Ninety-three percent of the patients began their accounts by describing their symptoms in the early stages of the illness. The patients’ utterances indicated that they were able to identify initial ailments (e.g. leg numbness, speech problems and severe headache) as signs of a serious illness. Next, the patients described the diagnostic process and the moment they found out that a stroke had caused their problems. Patients recalled in detail the circumstances in which stroke happened and used specific medical terminology on numerous occasions (e.g. . . . I had an ischemic stroke and there is enormous difference in comparison to haemorrhage stroke’’ K.B., female, age 85, ischemic stroke in the left hemisphere). The latter indicated that they were aware of their medical situation. Subsequently, recurring elements in the patients’ utterances concerned activities that were undertaken to regain health. Sixty-three percent of the patients described in detail the process of rehabilitation and exercises to stimulate cognitive processes that they invented themselves or that were conducted with the help of neuropsychologists. Many described shortages of medical services. As the rehabilitation process continued, the majority of patients (60%) began to realize that the consequences of the illness might be irreversible, which resulted in frustration (e.g. I am not a kind of person I used to be anymore’’ P.E, female, age 58, ischemic stroke in the left hemisphere). This stage of the narratives was characterized by a story of loss of some or all of the following: speech (e.g. the inability to convey thoughts precisely); work (e.g. the inability to fulfil previous professional responsibilities); finances (few disability benefits); opportunities to follow individual passions (e.g. the inability to practice jogging because of paralysis); social bonds (e.g. language difficulties that affected the quality of social interactions); efficiency of cognitive processes (e.g. memory capacity); social roles and position in the family (e.g. from breadwinner to a disabled person requiring help); physical ability caused by paralysis and the consequent loss of independence (e.g. the inability to drive a car, manage accounts or move around the city); emotional instability (e.g. tearfulness because of the stroke). However, a few patients also mentioned their day-to-day efforts to regain health, to stay active and keep engaging in hobbies (e.g. gardening, fishing), their progress in physical and speech skills and the help of relatives and spouses. Finally, the patients’ accounts revealed that their experiences concerning the illness had changed their priorities. Most participants reported that they now valued cheerful interpersonal contacts, family relationships and independence most highly (e.g. . . . and the life is better in that sense that I returned to my family home, I am with my parents again’’ R.B. LHD, male, age 44, ischemic stroke in the left hemisphere; Before the stroke
I simply did not have time for myself’’ T.K. female, age 58, ischemic stroke in the left hemisphere).
Discussion The present study elucidated the impact of stroke on psychosocial functioning by highlighting the main topics of illness narratives produced by stroke patients. Eight main themes emerged from the data and were classified as follows (the themes are presented in the order of incidence in the patients’ narratives): Medical Information; Strategies of Coping with the illness; Cognitive Functioning; Interpersonal Changes; Physical Functioning; Social Support; Emotional Functioning and additionally Information Irrelevant to the Question. The most frequent organization of the themes followed the course of medical intervention and rehabilitation. The temporal-causal structure of the patients’ narratives was relatively preserved (including the narratives of patients with aphasia), which is similar to the results of Ulatowska et al. [42]. The patients’ narratives were not guided in the present study, so we presume that the identified themes reflected subjective issues of great importance to the patients. The amount of information about a particular topic in each story may indicate the importance of that topic for the narrator (that issue was also raised by other studies conducted in the tradition of narrative medicine) [46]. The topics identified in the present study are congruent with those found in previous research focused on specific groups of patients or aspects of life with stroke. For example, Green and King [38], who interviewed male patients, reported topics of physical limitations, loss of the ability to work, loss of masculinity, weakness, depression, loss of autonomy, loss of social contacts, cognitive impairments and difficulties in redefinition of the patients’ self as a stroke survivor. Bronken and collegues [35] interviewed aphasic individuals and identified utterances describing challenges due to communication inefficiency. Patients also focused on social support that was perceived as helpful [27]. Martinsen and colleagues [34] concentrated on the impact of stroke on family life. Patient utterances revealed an initial struggle to regain previous status and a more resigned attitude later. Finally, a meta-analysis of qualitative studies on narrative by Salter et al. [16] evidenced topics such as negative personality changes; loss of physical and cognitive capacities); uncertainty (about the future and about the recovery); social isolation; and adaptation and reconciliation. In our study the utterances related with losses as well as adjustment to the consequences of the illness were elicited by the not prompting procedure thus the present study confirms the importance of these topics for the patients. On the other hand, statements about strategies of coping with the illness revealed mostly positive thinking, a desire to
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thrive for recovery, and a realization of the progress achieved since the stroke. The support of family and friends was mentioned by the majority of patients. These utterances suggest that the patients perceived positive changes originating from coping with stroke effects, particularly a deeper appreciation of self-strength and family bonds. Therefore, the narratives conveyed important information about their attitude towards the condition. Utterances revealing coping can be meaningful for the clinician whose role is to support the positive aspects in patients’ recoveries [47]. Although emotional problems are documented to be common in the post-stroke population [48,49], in the present study patients rarely referred to their emotional situation. The explanation cannot be just the little insight into their own emotional states as a result of a stroke, since previous studies showed that post-stroke patients were capable of describing even a complex combination of emotions they experienced [50]. Our patients seldom mentioned their emotional reactions connected to the illness. This may be due to the fact that there was no direct question about it, and the social convention in Poland is not to talk about difficult feelings. Furthermore medical and neuropsychological intervention in Poland focuses rather on the physical and cognitive rehabilitation. Therefore subjects may be less disposed towards talking about their emotional problems (to see problems in Central-Eastern Europe with stroke care) [51,52]. In the previous studies it was reported that culture may shape stroke experience [53]. It is therefore possible that patients from different sociocultural backgrounds will be more likely to express their emotional problems even if not asked directly. Another aspect of our results are sex differences in the frequency and the content of the statements on emotional functioning. Previous studies suggest that women are better at recognizing emotions and express themselves more easily [54]. Therefore, we expected that female subjects would discuss emotions more extensively, and report experiencing emotions more intensely than men would. However in our study it were men who mentioned emotional problems accompanying stroke more often. Additionally, some statements were implicitly emotionally loaded even when they explicitly referred to a particular nonemotional category e.g. medical information. It was especially salient when statements referred to interpersonal changes- in which case they frequently had an emotional overtone. This issue reflects the complexity of the narratives and it should be considered by clinicians working with patients. The results of the present study also indicated that, despite the presence of stroke, the participants were able to construct narratives that were understandable, were relatively easy to follow (as a result of the preserved temporal-causal structure of the narratives) and reflected their experiences of illness. Moreover, the distribution of the main topics and the chronological organization of the events might suggest that the patients adhered to the course of the illness to achieve consistency in their narratives. Ulatowska et al. [42] stressed that when narratives are tellable, the patients feel that they are contributors to the communication environment. The understanding between the patient and the clinician is deeper, and it is possible to address more complicated psychological problems in the patient’s life. In the same vein, effective communication between patients and clinicians contributes to greater involvement of patients in neurological rehabilitation [13]. An unstructured interview during the diagnostic process of a patient with brain injury can be an effective tool in assessing not only the psychophysical state of the patient but also his or her motivation for rehabilitation. It can be assumed that if the whole narrative is emotional, indicating feelings of loss and frustration, rehabilitation should be directed at not only higher cognitive
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processes but also at emotional processes [55]. On the other hand, even if the narrative is devoid of the emotional statements the clinician should draw inferences about patient’s psychological functioning based on prosody, facial expression and nonverbal communication. Lack or rare emotional statements might also suggest maladaptive coping strategy when patients deny their constraints. The rehabilitation in this situation might be inefficient as the patients are not aware or not reconciled with the consequences of the illness. It would be beneficial if the clinical directly asks about the patients’ feelings. Our findings have proven that the content analysis uncovers painful and important issues in the patient’s functioning (e.g. disabilities, coping strategies, social interactions), as well as his or her attitude and expectations about the future. It has been widely demonstrated that the consideration of these individual concerns helps to direct rehabilitation processes with regard to the patient’s individual goals [56]. As a result, it contributes to a greater sense of personal control in stroke survivors [15,16]. Previous investigations have shown that the thematic content of illness narrations can be modified by demographic factors [57–60]. The aforementioned factors were not directly investigated in this study. However, the data obtained suggested the relevance of older age in coping with illness. Some older participants expressed the opinion that the effects of stroke would be worse in younger people and considered stroke a normal component of old age. In contrast, younger participants found it more difficult to adapt successfully to new situations, and they considered a sudden illness a disruptive event. These results were with line with previous findings that focused directly on the illness stories of elderly stroke survivors, suggesting that age affects both the experience and the interpretation of the chronic illness [1,57]. Another factor which may influence the content of stroke stories is lesion site [61]. This issue was not explicitly analyzed, but we found that LHD patients frequently reported cognitive difficulties, especially with language. It could be due to the selective impairment of language areas in case of LHD patients but also may have resulted from a lack of insight in RHD patients who could have not noticed cognitive impairments. Thematic analysis provides a flexible tool for very complex data [44]. In the present study we wanted to avoid personal interpretation of the narratives therefore we applied the data driven approach. It allowed reporting patterns within data which were the most prevalent across the data set. It is possible that application of different theoretical approach will provide a poorer description of data overall, but more detailed information of some aspects of the data. Nevertheless, this inductive approach allowed capturing the most important elements of socio-psychological experiences of the stroke survivors and thus, it did not restrain other methods of analysis which may be applied to answer the more specific research questions. Limitations The study is limited by sample size and its heterogeneity, e.g. site of the lesion, gender, the severity of the illness and accompanied cognitive impairments. Comparing the contents and organization of the narratives produces by groups of patients homogeneous according to the mentioned above factors could provide more specific information concerning the themes that are important for different groups of the stroke survivors. It is also possible that stroke stories evolve with the duration of the illness and the stage of the recovery. Therefore, due to heterogeneous sample we did not capture this pattern. Therefore, the findings may not be applicable to all stroke survivors. However, using heterogeneous sample allowed us to
DOI: 10.3109/09638288.2014.957789
elucidate a wide range of themes which patients consider to be important in their life after stroke. Future studies are needed to investigate the influence of other demographic factors (i.e. gender, education and socio-economic status), socio-cultural and medical variables (i.e. right- versus left-brain disorders, duration of illness) on the themes and organization of illness narrations.
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Implications for clinical practice Experience of illness and life changes following stroke should be recognized as central to the provision of targeted rehabilitation. Our study recommends the content analysis of the free narrations about illness as a method to help the clinicians with a better insight of the patients’ subjective experiences and attitudes towards their condition. The investigation highlights seven key general thematic categories. The main areas to probe in a discussion include information related to the stay in hospital, diagnostics and treatment, change in living conditions, cognitive changes, physical changes, psychological changes, social support and strategies used in order to regain health. These categories may be useful for clinicians to help individuals to clarify their main concerns following a stroke. The interviewer should pay attention to whether or not the patient mentions these topics, which of them he or she places the most emphasis on and how the narration is organized. For example, the clinician should evaluate if the patient understands the medical determinants of his condition and treatment, if he or she manages emotionally and has enough support from the family environment. The clinician should also pay attention to whether or not any topic prevails and if others are missing. Gradually formulating more specific questions that elicit missing data and enquiring further about the topics the patient omits intentionally (e.g. emotional problems) is recommended. In addition, the results of the present study revealed a temporal-causal structure of the narratives consistent with the real order of the events related with the illness. Further studies are needed to verify if this is standard in stroke survivors. If so, when the patient provides a temporally disorganized story the clinician might suspect executive impairment or emotional problems that should be evaluated further [62]. In conclusion, in this study the illness narratives included themes that patients deemed important. These may help health professionals identify topics important for the patients, recognize his or her needs (medical, social, psychological, etc.) and subsequently design a meaningful and effective rehabilitation. Because they can lead to better communication between patients and health professionals, illness narratives can contribute to both the patient’s reintegration into the community and the rehabilitation offered.
Declaration of interest The authors report no conflicts of interest. This investigation was supported by a Mazowieckie Scholarship (Mazowieckie Stypendium Doktoranckie) and funds provided by the Faculty of Psychology, University of Warsaw (BST 500 166/17). We confirm that all patient/personal identifiers have been removed or disguised. The patients/persons described are not identifiable and cannot be identified through the details of their stories.
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33. Teasdale TW, Christensen A-L, Willmes K, et al. Subjective experience in brain injured patients and their close relatives: a european brain injury questionnaire study. Brain Injury 1997;11: 543–64. 34. Martinsen R, Kirkevold M, Sveen U. Younger stroke survivors’ experiences of family life in a long-term perspective: a narrative hermeneutic phenomenological study. Nurs Res Pract 2012;2012. Article ID: 948791. 35. Bronken BA, Kirkevold M, Martinsen R, et al. Psychosocial wellbeing in persons with aphasia participating in a nursing intervention after stroke. Nurs Res Pract 2012;2012:1–14. 36. Rudman DL, Hebert D, Reid D. Living in a restricted occupational world: the occupational experiences of stroke survivors who are wheelchair users and their caregivers. Can J Occup Ther 2006;73: 141–52. 37. Kitson AL, Dow C, Calabrese JD, et al. Stroke survivors’ experiences of the fundamentals of care: a qualitative analysis. Int J Nurs Stud 2013;50:392–403. 38. Green TL, King KM. Experiences of male patients and wife-caregivers in the first year post-discharge following minor stroke: a descriptive qualitative study. Int J Nurs Stud 2009;46: 1194–200. 39. Lucki W. The set of clinical trials administered to examine cognitive processes in patients with brain injury (In Polish). Warszawa: Psychological Test Laboratory of the Polish Psychological Association; 1995. 40. Goodglass H, Kaplan E. The assessment of aphasia and related disorders. Philadelphia (PA): Lea & Febiger 1983. 41. Werner A, Isaksen LW, Malterud K. I am not the kind of woman who complains of everything: illness stories on self and shame in women with chronic pain. Soc Sci Med 2004;59:1035–46. 42. Ulatowska H, Reyes B, Santos T, et al. Personal narratives in aphasia: understanding narrative competence. Top Stroke Rehabil 2013;20:36–43. 43. Mayring P. Qualitative content analysis. Forum qualitative Sozial forschung/Forum. Qual Soc Res [Online Journal] 2000;1:Art.20. 44. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3:77–101. 45. Pouli N, Nair DR, Lincoln NB, Walsh D. The experience of living with knee osteoarthritis: exploring illness and treatment beliefs through thematic analysis. Disabil Rehabil 2014;36:600–609. 46. Hall JM, Powell J. Understanding the Person through Narrative. Nurs Res Pract 2011;2011. Article ID: 293837. 47. Kitzmu¨ller G, Ha¨ggstro¨m T, Asplund K. Living an unfamiliar body: the significance of the long-term influence of bodily changes on the
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RESEARCH PAPER
A thematic framework of illness narratives produced by stroke patients A. Pluta1,2, H. Ulatowska3, N. Gawron4, M. Sobanska4, and E. Lojek4 Institute of Physiology and Pathology of Hearing, Warsaw, Poland, 2World Hearing Centre, Nadarzyn, Poland, 3School of Behavioral and Brain Sciences, University of Texas at Dallas, Dallas, Texas, and 4Faculty of Psychology, University of Warsaw, Warsaw, Poland
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Abstract
Keywords
Purpose: The present study aims at elucidating the impact of stroke on psychosocial functioning of stroke survivors. Methods: Data were investigated using interpretative thematic analysis of illness stories produced by 29 patients. Results: Eight themes emerged from the data: Medical Information; Interpersonal Changes; Cognitive, Physical and Emotional Functioning; Strategies of Coping; Social Support; and Information Irrelevant to the Question. The most frequent organization of the themes followed the course of medical intervention and rehabilitation. Narrations of individual patients varied in terms of the presence of particular themes, the amount of information on each topic and organization. Conclusions: The results suggest that the analysis of non-guided illness narratives can be effectively used to identify the thematic areas important to individual stroke patients. The thematic content analysis of stroke stories can allow health professionals to better understand the patient’s state of knowledge related to illness as well as his or her socio-psychological functioning which may be useful in the course of planning further assessment and rehabilitation of patients with stroke.
Illness stories, psychosocial functioning, stroke, thematic framework History Received 25 August 2013 Revised 18 August 2014 Accepted 20 August 2014 Published online 8 September 2014
ä Implications for Rehabilitation
Experience of illness and life changes following stroke should be recognized as central to the provision of targeted rehabilitation. To understand the subjective perspective a content analysis of the content narrative is recommended. Our study highlights seven general thematic categories that may be regarded as key. The categories may be useful for clinicians to help individuals to clarify their main concerns following a stroke.
Introduction
Importance of term discourse and content analysis
Cerebral stroke not only constitutes a threat to an individual’s life but also damages his or her personal integrity. This illness usually implies an irreversible change in the patient’s life, in which the effects of the injury and related experiences require emotional and psychological integration into a shifted sense of identity [1]. Health professionals emphasize that listening to stories about illness not only allows them to understand the patient’s situation better but also enables them to learn about the patient’s approach to his or her own ailments and coping strategies [2–6]. Although illness narratives have been important in the study of personal experiences of patients for almost four decades [7], little is known about the thematic content of illness narratives produced by stroke patients. This article reports our examination of the content of stroke stories in order to introduce a framework for understanding the subjective experience of stroke.
The term discourse refers to a stream of language-related occurrences that take place in a situational context. The essence of discourse lies in the transfer of language that expresses a specific thought or subject directed at an interlocutor. It conveys information concerning cognitive, emotional and social functioning [8,9]. Neuropsychological changes after stroke constitute an interaction between pre-morbid cognitive and personality features and brain pathology. Therefore, learning about the patient’s subjective experiences may be the key to directing rehabilitation at higher brain functions and supporting the patient in coping with emotional problems [10–12]. This follows the first rule of neuropsychological rehabilitation [11], but the investigations on the educational potential of illness narratives revealed that patients still notice the lack of attention to personal experiences in medical institutions [13]. On the other hand, a number of studies have recognized the potential of illness stories for clinicians [14]. Narrative-based practice is considered also to be a complementary component to evidence-based practice [15,16]. Studies of discourse in people with brain injury provide important information concerning brain speech mechanisms [9],
Address for correspondence: Agnieszka Pluta, World Hearing Center, Mokra 17 Str., Kajetany 05-830 Nadarzyn, Poland. Tel: 48602850832. E-mail: [email protected]
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the patient’s psychophysical state and his or her coping strategies towards the illness [16,17]. Moreover, by listening to patients speak about their experience with illness, particularly their difficulties as well as their concepts of recovery, health professionals may gain insight on how to target rehabilitation that helps patients adjust and reach their goals, if possible [15,18,19]. Researchers of illness narratives have also emphasized the usefulness of the stories for the patients themselves [20]. The ill person needs to analyse the results of the illness, reconstruct his or her identity and impose order on his or her surroundings and new role in life [21]. It is claimed that telling stories about our lives is a crucial element of shaping a person’s identity, because illness narratives help define the social roles we played in the past, the roles we perform in the present and the goals we aspire to achieve [22]. By comparing personal experiences depicted in illness stories, patients may gain psychological support for emotional states that they share with other patients and learn about strategies for coping with the illness [6,23,24]. A content analysis of the narrative can therefore be a useful tool in understanding the patient’s subjective perspective [15]. Listening to patients’ stories might contribute to identifying key themes in illness narratives that may help clinicians understand the patients’ experiences and enrich their professional competence [25]. There is also a general agreement that patients should be given the opportunity to talk about their illness as well as their treatment, because this activity has a therapeutic effect [25,26]. Whilst the benefit of exploring patients’ narratives has been widely recognized [17,25,27–30], only a small number of studies have investigated the content of stories told by patients who have experienced a stroke. The majority of these studies applied structured or semi-structured interviews with pre-determined questions. For example, Nilsson, Jansson, & Norberg [31] focused mainly on patients’ experiences during their stay in hospital, their home-coming and their mental adaptation to the consequences of stroke. Martin and colleagues [32] probed individual experiences of cognitive, emotional and social difficulties after stroke with the use of the 63-item European Brain Injury Questionnaire [33]. The patients emphasized on depressive mood and cognitive difficulties as the main consequences of stroke. Martinsen et al. [34] interviewed stroke survivors aged 20–61 years and analyzed how stroke affected their relationships with family. Two main themes emerged: ‘‘struggling to re-enter the family’’ close to stroke onset and ‘‘screaming for acceptance’’ later. Younger patients mentioned being left by their partners, leaving their studies or their work and social isolation. Fathers in particular worried about their inability to fulfil their parental roles and elder patients struggled to maintain contact with friends [34]. Other stroke studies have examined narratives for factors that shape successful recovery [15], quality of life [17,35], occupational experience [36] or experience of the fundamentals of care [37]. Across these studies, several key themes appeared repeatedly, including change of life, stroke’s impact on emotions, personality, social roles and abilities. However, these studies did not allow patients to choose what to say about their illness. Only few studies analyse topics in unhampered narrations of stroke survivors [38]. Therefore, there is still a need to learn about the topics stroke survivors focus on, the prevalence and complexity of particular topics and their arrangement in an unconstrained narration. Hence, by using open-ended questions, refraining from any prompting and using qualitative analysis of narrative content, the authors of the present study aimed to gain a more comprehensive understanding of psychosocial functioning of stroke survivors elucidated from a patient-centred perspective.
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Methodology Objective The purpose of this study was to establish key themes and their order in the stories produced by patients who have experienced stroke. In order to identify these themes from the perspective of patients, the following research questions were posed: (1) What is the content of narratives produced by people with acquired brain injury after stroke? (2) What is the distribution and organization of the topics in these narratives? Subjects Nineteen patients with left hemisphere damage (LHD) and ten with right hemisphere damage (RHD) with focal lesions were recruited at the Centre for Neurological Rehabilitation in Konstancin-Jeziorna near Warsaw, Poland. All participants had suffered a single stroke. The aetiology of brain damage was established based on neurological data (CT or MRI). The participants had no history of previous neurological or psychiatric problems, alcohol or drug abuse or earlier instances of loss of consciousness. The standard neuropsychological assessment included selected trials from the Test Battery for the Cognitive Assessment of Patients with Brain Damage [39]. It is widely used in Poland tool which enables the qualitative evaluation of different aspects of language production and comprehension as well as general cognitive functioning encompassing; memory, praxia, gnosia. The results of the performance in each trial are presented descriptively therefore the whole neuropsychological evaluation was performed by the psychologist with considerable experience and competence to judge whether the patients’ performances represent brain related deficits. The severity of aphasia was also measured using the Polish version of the Aphasia Severity Rating Scale in the Boston Diagnostic Aphasia Examination [40]. This provides an 5-point scale for measuring qualitative aspects of speech. The inclusion criteria for the present study were as follows: adult, stroke, sufficient cognitive functioning to participate in the study (e.g. capacity to give informed consent) and the ability to comprehend speech and produce longer utterances. Participants required a minimum score of three (ability to discuss almost everyday problems with minor or no assistance) on the Aphasia Severity Rating Scale. The exclusion criteria were severe cognitive impairment confirmed in neuropsychological evaluation and psychiatric disorders diagnosed by a medical doctor. The patients’ ages ranged between 33 and 85 years (58 SD 12.7 years), and the duration of the illness varied between 6 months and 240 months (46 SD 54.5 months). The sample included 19 men and 10 women. Of these, 20 patients had secondary education, 6 had post-secondary education, and 3 had vocational education (13 SD 2.2 years). All patients were native speakers of Polish. Three aphasic patients scored 5 points, 14 scored 4 points, and 2 scored 3 points on the Aphasia Severity Rating Scale. In case of RHD patients, all scored 5 points. Among the LHD patients, some loss of fluency in speech, reference errors, perseverations and circumlocutions were apparent. However, all patients were able to construct long narratives about their illness without help. None of the patients failed to convey their ideas. Therefore, inference or guessing by the listener was not necessary. Procedure All testing procedures were conducted in a quiet room. The patients were informed about the aim and the procedure of the study and gave their informed consent. The research project was
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DOI: 10.3109/09638288.2014.957789
accepted by the Ethics Commission at the Faculty of Psychology, University of Warsaw. The study aimed to encourage the participants to create a narrative about their illness without prompting. Two questions were posed: (1) Can you tell me about your illness? (2) How has your life changed because of the illness? No additional guiding questions were asked during the patient’s narratives. The narrative was considered completed when the participant indicated that they had finished by uttering a closing statement, such as ‘‘That’s all,’’ or by no longer speaking. The narratives were recorded on a Dictaphone, and later the tape-recorded data were transcribed verbatim and identifying data were removed. The analysis was inspired by the qualitative content analysis performed in other studies of illness stories, such as those of patients with chronic pain [41] or patients with aphasia [42]. It entails eliciting narratives for identifying information relevant to quality of life or other predefined questions. The main idea of the analysis was to preserve the advantages of quantitative content analysis for more qualitative text interpretation. It enabled to fit the narrative into the situation of text production and socio-cultural background but also to analyze material following the structured rules. The rules of the analysis encompassed: inductive category development (to formulate them in terms of material), revision of the selected categories, analysis of reliability and validity of the categories, computing the frequencies of the selected categories in the narratives [43]. All aspects of the analysis are described in details below. Extracting the main topics of illness narrations The main procedural steps of the analysis involved: (a) indicating concepts representing different aspects of the patients’ experience of the illness, and (b) identifying main and recurring topics. We followed Braun and Clarke [44] approach to thematic analysis. Firstly, the authors become familiar with the data (through repeated reading) and identified the repeated pattern of thematic content. Secondly, the presence of these themes was systematically checked across each transcript. In this step of the analysis, the first author read transcripts several times to confirm the meaning of the texts. Then, the interview texts were divided into meaning units, i.e. sentences or paragraphs with the same thematic content. Next, two independent researchers (qualified clinical psychologists) read the narrative material independently in order to evaluate the appropriateness and reliability of the established thematic categories. The researchers were provided with a description of each category. Then, narrative material was presented in written form and the researchers were asked to code each section of the text for the themes (each category was assigned a number from one to eight). The principle aim of this stage of the analysis was to determine the degree of agreement between raters (provided in the Results below). In the second stage of the analysis, the proportion of propositions, defined as each clause with a verb and its arguments were counted. Propositions were also counted when a sentence was grammatically incorrect but provided meaningful information. Empty phrases (e.g. ‘‘you know,’’ ‘‘and so on’’) and semantic repetitions were excluded from the analysis.
Results The topic content of stroke narratives The analysis of the narratives showed that despite language impairments, all narratives constituted a consistent whole. The number of propositions in the narratives ranged from 15 to 169 (58 SD 39.4).
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The first step in the analysis revealed several main topics around which patients built their propositions. These were divided into eight thematic categories. Medical information: medical descriptions of the illness, treatment and symptoms preceding the onset of illness, such as head pain, type of stroke and detailed description of medical screening (identified in 86% [n ¼ 25] of patients’ narratives); Strategies of coping with the illness: participating in neuropsychological therapy, using new cognitive strategies invented to cope with memory problems and engaging in moderate physical activity (identified in 75% [n ¼ 22] of patients’ narratives); Cognitive functioning: deficits in higher cognitive processes perceived by the patient, such as memory, language and attention (identified in 72% [n ¼ 21] of patients’ narratives); Interpersonal changes: referring to subjectively perceived changes in interpersonal contacts and living conditions due to the stroke, such as loss of friendship, loss of job and difficulties communicating with family members (identified in 62% [n ¼ 18] of patients’ narratives); Physical functioning: physical restrictions, such as paralysis and the inability to write or drive a car (identified in 62% [n ¼ 18] of patients’ narratives); Social support: support of relatives and friends such as financial support, emotional support, relatives’ engagement in rehabilitation (identified in 51% [n ¼ 15] of patients’ narratives); Emotional functioning: subjectively perceived emotional changes, such as loss of confidence, fear and emotional liability (identified in 41% [n ¼ 12] of patients’ narratives); Information irrelevant to the question: topics not relevant to the illness story, such as political affairs and personal remarks not relevant to the illness (occurred sporadically in 44% of narratives [n ¼ 13], but these irrelevant themes did not occur in a repetitive manner). Examples of utterances referring to these categories are presented in Table 1. The reliability analysis of inter-rater agreement (two independent researchers and the first author) revealed that Kendall’s W coefficient was high [W ¼ 0.922; chi2 (295) ¼ 815.617; p50.001]. This means that thematic categories were established appropriately and were easily identified from the meaning units. Variability among raters (when the raters did not agree on the category utterances should be assigned to) was observed in 22.2% of utterances (66 out of 297; in the remaining meaning of units the raters were unanimous). In case of discrepancies, we applied the solution established by other authors [45] and the category was assigned after mutual agreement was reached via discussion among researchers. The analysis of common themes revealed that patients’ narratives most frequently referred to medical information about their diagnosis and their subjective perceptions of interpersonal changes. Moreover, medical information comprised the most detailed and longest part of the narratives. Patients also talked a great deal about strategies of coping with the illness that were undertaken to regain health and cognitive abilities; cognitive difficulties; losses in social bonds and work; support of relatives and friends; and physical constraints. The smallest portion of the narratives referred to emotional changes. We identified this topic in the narratives of 9 out of 19 men and in 3 out of 10 women, which is 47% and 30% respectively. Men usually complained they had become impatient, impulsive, annoyed or angry more easily. They also admitted that they cried more frequently, that they felt down and lost interest in their usual activities. In contrast women emphasized the feeling of anxiety and unease.
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Table 1. Examples of utterances referring to identified thematic categories. Participants characteristics Examples
Age
Lesion site
Gender
‘‘. . . The carotid artery was blocked and that was the cause of stroke; an atheroma has simply come off . . .’’ ‘‘Only deaf tissue had left, left hemisphere is totally absent. It is . . . and that’s all. Someone has said that maybe after some time . . . because there is some blood flow. It is so-called compensatory circulation.’’ ‘‘I’m completely excluded from what I used to do.’’ ‘‘. . . You don’t have a family, or friends.’’ ‘‘. . . My whole world just collapsed. I had my own company and had to close it down.’’ ‘‘When somebody speaks to me, I don’t always understand, and that’s the worst.’’ ‘‘. . . When somebody speaks I understand everything, but I wasn’t able to say anything, somebody tried to get me to . . . , no, nothing, the worst was when . . . ah, terrible . . .’’ ‘‘I used to know numbers by heart, now I have to put those into mobile phone.’’ ‘‘. . . I still have problems with writing. I can’t hold a pen. I scribble, sign something.’’ ‘‘The car stays parked; I can’t drive.’’ ‘‘I’ve become unbearable at home; I used to be nice and polite and now I’m a completely different person; I cry at times.’’ ‘‘. . . I’m really nervous; I can’t find a place for myself; everything bothers me. I put something wrongly, and all of that makes me nervous . . .’’ ‘‘I’m so tearful now . . .’ I’m nervous’, ‘I’ve broken down’, ‘Life does not have purpose to me.’’ ‘‘I used to stay awaken alone till late and I used to learn to speed up whatever’’ (the patient meant speech rehabilitation). ‘‘I have been practicing memory through whole life, because when you put something into your head, it would stay there. It is not that way that something has melted in my head . . . Since I live, I will struggle. I have such a character. You have to live, not abnegate, because it is senseless.’’ ‘‘I am already over 65 and retired, so I think that the young are more affected by this illness. They can’t work. So it is harder for them to bear it. With me, it just happened. I didn’t expect this illness, but so be it.’’ ‘‘My family helps me.’’ They said: ‘‘We (the patient’s family) won’t leave you alone.’’ ‘‘Regarding experiences I was once at a trial with a lady which was my companion and when it finished we went to the downtown and had a meal together, I mean the lady and me.’’ ‘‘We met in a church. By that time my husband had already passed away and I was very confused and in despair, mourning and wearing black clothes as any widow would do.’’ ‘‘I didn’t smoke nor was I a heavy drinker at all. Oh dear, can I pour you out a little liquor?’’
60
RHD
F
20
5
R.B.
55
LHD
M
9
4
M.O.
58 60 54
RHD RHD LHD
M M M
1 4 0.5
5 4 5
P.A. K.P. S.T.
65
LHD
M
6
4
T.O.
55
LHD
F
7
3
J.W.
55
LHD
M
0.6
4
B.J.
54
LHD
M
0.6
4
S.T.
76 59
LHD RHD
M M
3 1
5 4
S.M. P.A.
55
LHD
M
7
4
J.W.
65
LHD
M
0.5
4
T.D.
40
LHD
F
1
4
B.D.
85
LHD
F
0.5
5
K.B.
66
RHD
F
0.5
5
B.K.
57 66
LHD LHD
M F
1 2
4 5
T.S. K.A.
57
LHD
M
1
4
T.S.
66
LHD
F
2
5
K.A
55
LHD
M
7
4
J.W.
Thematic category Medical information
Interpersonal changes
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Cognitive functioning
Physical functioning Emotional functioning
Coping strategies
Social support Information irrelevant to the question
Years post stroke
Severity rate
Initials
RHD-right hemisphere damage, LHD-left hemisphere damage; F-female, M-male.
The percentages of utterances in the indicated categories are presented in Figure 1. Organization of the stroke narratives An important feature of the stroke stories analyzed in this study was the organization of the information into a logical whole.
The organization of the topics described in the narratives clearly followed the course of the medical intervention, rehabilitation and, sometimes, progress in physical and cognitive recovery, revealing that patients had detailed knowledge about causal sequences and were able to narrate their story in an order consistent with the course of real events.
Stroke stories
DOI: 10.3109/09638288.2014.957789
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Figure 1. Percentage of proposition referring to identified categories (total number of propositions referring to the specific topic in all narratives divided by total number of propositions within the narratives).
Ninety-three percent of the patients began their accounts by describing their symptoms in the early stages of the illness. The patients’ utterances indicated that they were able to identify initial ailments (e.g. leg numbness, speech problems and severe headache) as signs of a serious illness. Next, the patients described the diagnostic process and the moment they found out that a stroke had caused their problems. Patients recalled in detail the circumstances in which stroke happened and used specific medical terminology on numerous occasions (e.g. . . . I had an ischemic stroke and there is enormous difference in comparison to haemorrhage stroke’’ K.B., female, age 85, ischemic stroke in the left hemisphere). The latter indicated that they were aware of their medical situation. Subsequently, recurring elements in the patients’ utterances concerned activities that were undertaken to regain health. Sixty-three percent of the patients described in detail the process of rehabilitation and exercises to stimulate cognitive processes that they invented themselves or that were conducted with the help of neuropsychologists. Many described shortages of medical services. As the rehabilitation process continued, the majority of patients (60%) began to realize that the consequences of the illness might be irreversible, which resulted in frustration (e.g. I am not a kind of person I used to be anymore’’ P.E, female, age 58, ischemic stroke in the left hemisphere). This stage of the narratives was characterized by a story of loss of some or all of the following: speech (e.g. the inability to convey thoughts precisely); work (e.g. the inability to fulfil previous professional responsibilities); finances (few disability benefits); opportunities to follow individual passions (e.g. the inability to practice jogging because of paralysis); social bonds (e.g. language difficulties that affected the quality of social interactions); efficiency of cognitive processes (e.g. memory capacity); social roles and position in the family (e.g. from breadwinner to a disabled person requiring help); physical ability caused by paralysis and the consequent loss of independence (e.g. the inability to drive a car, manage accounts or move around the city); emotional instability (e.g. tearfulness because of the stroke). However, a few patients also mentioned their day-to-day efforts to regain health, to stay active and keep engaging in hobbies (e.g. gardening, fishing), their progress in physical and speech skills and the help of relatives and spouses. Finally, the patients’ accounts revealed that their experiences concerning the illness had changed their priorities. Most participants reported that they now valued cheerful interpersonal contacts, family relationships and independence most highly (e.g. . . . and the life is better in that sense that I returned to my family home, I am with my parents again’’ R.B. LHD, male, age 44, ischemic stroke in the left hemisphere; Before the stroke
I simply did not have time for myself’’ T.K. female, age 58, ischemic stroke in the left hemisphere).
Discussion The present study elucidated the impact of stroke on psychosocial functioning by highlighting the main topics of illness narratives produced by stroke patients. Eight main themes emerged from the data and were classified as follows (the themes are presented in the order of incidence in the patients’ narratives): Medical Information; Strategies of Coping with the illness; Cognitive Functioning; Interpersonal Changes; Physical Functioning; Social Support; Emotional Functioning and additionally Information Irrelevant to the Question. The most frequent organization of the themes followed the course of medical intervention and rehabilitation. The temporal-causal structure of the patients’ narratives was relatively preserved (including the narratives of patients with aphasia), which is similar to the results of Ulatowska et al. [42]. The patients’ narratives were not guided in the present study, so we presume that the identified themes reflected subjective issues of great importance to the patients. The amount of information about a particular topic in each story may indicate the importance of that topic for the narrator (that issue was also raised by other studies conducted in the tradition of narrative medicine) [46]. The topics identified in the present study are congruent with those found in previous research focused on specific groups of patients or aspects of life with stroke. For example, Green and King [38], who interviewed male patients, reported topics of physical limitations, loss of the ability to work, loss of masculinity, weakness, depression, loss of autonomy, loss of social contacts, cognitive impairments and difficulties in redefinition of the patients’ self as a stroke survivor. Bronken and collegues [35] interviewed aphasic individuals and identified utterances describing challenges due to communication inefficiency. Patients also focused on social support that was perceived as helpful [27]. Martinsen and colleagues [34] concentrated on the impact of stroke on family life. Patient utterances revealed an initial struggle to regain previous status and a more resigned attitude later. Finally, a meta-analysis of qualitative studies on narrative by Salter et al. [16] evidenced topics such as negative personality changes; loss of physical and cognitive capacities); uncertainty (about the future and about the recovery); social isolation; and adaptation and reconciliation. In our study the utterances related with losses as well as adjustment to the consequences of the illness were elicited by the not prompting procedure thus the present study confirms the importance of these topics for the patients. On the other hand, statements about strategies of coping with the illness revealed mostly positive thinking, a desire to
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thrive for recovery, and a realization of the progress achieved since the stroke. The support of family and friends was mentioned by the majority of patients. These utterances suggest that the patients perceived positive changes originating from coping with stroke effects, particularly a deeper appreciation of self-strength and family bonds. Therefore, the narratives conveyed important information about their attitude towards the condition. Utterances revealing coping can be meaningful for the clinician whose role is to support the positive aspects in patients’ recoveries [47]. Although emotional problems are documented to be common in the post-stroke population [48,49], in the present study patients rarely referred to their emotional situation. The explanation cannot be just the little insight into their own emotional states as a result of a stroke, since previous studies showed that post-stroke patients were capable of describing even a complex combination of emotions they experienced [50]. Our patients seldom mentioned their emotional reactions connected to the illness. This may be due to the fact that there was no direct question about it, and the social convention in Poland is not to talk about difficult feelings. Furthermore medical and neuropsychological intervention in Poland focuses rather on the physical and cognitive rehabilitation. Therefore subjects may be less disposed towards talking about their emotional problems (to see problems in Central-Eastern Europe with stroke care) [51,52]. In the previous studies it was reported that culture may shape stroke experience [53]. It is therefore possible that patients from different sociocultural backgrounds will be more likely to express their emotional problems even if not asked directly. Another aspect of our results are sex differences in the frequency and the content of the statements on emotional functioning. Previous studies suggest that women are better at recognizing emotions and express themselves more easily [54]. Therefore, we expected that female subjects would discuss emotions more extensively, and report experiencing emotions more intensely than men would. However in our study it were men who mentioned emotional problems accompanying stroke more often. Additionally, some statements were implicitly emotionally loaded even when they explicitly referred to a particular nonemotional category e.g. medical information. It was especially salient when statements referred to interpersonal changes- in which case they frequently had an emotional overtone. This issue reflects the complexity of the narratives and it should be considered by clinicians working with patients. The results of the present study also indicated that, despite the presence of stroke, the participants were able to construct narratives that were understandable, were relatively easy to follow (as a result of the preserved temporal-causal structure of the narratives) and reflected their experiences of illness. Moreover, the distribution of the main topics and the chronological organization of the events might suggest that the patients adhered to the course of the illness to achieve consistency in their narratives. Ulatowska et al. [42] stressed that when narratives are tellable, the patients feel that they are contributors to the communication environment. The understanding between the patient and the clinician is deeper, and it is possible to address more complicated psychological problems in the patient’s life. In the same vein, effective communication between patients and clinicians contributes to greater involvement of patients in neurological rehabilitation [13]. An unstructured interview during the diagnostic process of a patient with brain injury can be an effective tool in assessing not only the psychophysical state of the patient but also his or her motivation for rehabilitation. It can be assumed that if the whole narrative is emotional, indicating feelings of loss and frustration, rehabilitation should be directed at not only higher cognitive
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processes but also at emotional processes [55]. On the other hand, even if the narrative is devoid of the emotional statements the clinician should draw inferences about patient’s psychological functioning based on prosody, facial expression and nonverbal communication. Lack or rare emotional statements might also suggest maladaptive coping strategy when patients deny their constraints. The rehabilitation in this situation might be inefficient as the patients are not aware or not reconciled with the consequences of the illness. It would be beneficial if the clinical directly asks about the patients’ feelings. Our findings have proven that the content analysis uncovers painful and important issues in the patient’s functioning (e.g. disabilities, coping strategies, social interactions), as well as his or her attitude and expectations about the future. It has been widely demonstrated that the consideration of these individual concerns helps to direct rehabilitation processes with regard to the patient’s individual goals [56]. As a result, it contributes to a greater sense of personal control in stroke survivors [15,16]. Previous investigations have shown that the thematic content of illness narrations can be modified by demographic factors [57–60]. The aforementioned factors were not directly investigated in this study. However, the data obtained suggested the relevance of older age in coping with illness. Some older participants expressed the opinion that the effects of stroke would be worse in younger people and considered stroke a normal component of old age. In contrast, younger participants found it more difficult to adapt successfully to new situations, and they considered a sudden illness a disruptive event. These results were with line with previous findings that focused directly on the illness stories of elderly stroke survivors, suggesting that age affects both the experience and the interpretation of the chronic illness [1,57]. Another factor which may influence the content of stroke stories is lesion site [61]. This issue was not explicitly analyzed, but we found that LHD patients frequently reported cognitive difficulties, especially with language. It could be due to the selective impairment of language areas in case of LHD patients but also may have resulted from a lack of insight in RHD patients who could have not noticed cognitive impairments. Thematic analysis provides a flexible tool for very complex data [44]. In the present study we wanted to avoid personal interpretation of the narratives therefore we applied the data driven approach. It allowed reporting patterns within data which were the most prevalent across the data set. It is possible that application of different theoretical approach will provide a poorer description of data overall, but more detailed information of some aspects of the data. Nevertheless, this inductive approach allowed capturing the most important elements of socio-psychological experiences of the stroke survivors and thus, it did not restrain other methods of analysis which may be applied to answer the more specific research questions. Limitations The study is limited by sample size and its heterogeneity, e.g. site of the lesion, gender, the severity of the illness and accompanied cognitive impairments. Comparing the contents and organization of the narratives produces by groups of patients homogeneous according to the mentioned above factors could provide more specific information concerning the themes that are important for different groups of the stroke survivors. It is also possible that stroke stories evolve with the duration of the illness and the stage of the recovery. Therefore, due to heterogeneous sample we did not capture this pattern. Therefore, the findings may not be applicable to all stroke survivors. However, using heterogeneous sample allowed us to
DOI: 10.3109/09638288.2014.957789
elucidate a wide range of themes which patients consider to be important in their life after stroke. Future studies are needed to investigate the influence of other demographic factors (i.e. gender, education and socio-economic status), socio-cultural and medical variables (i.e. right- versus left-brain disorders, duration of illness) on the themes and organization of illness narrations.
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Implications for clinical practice Experience of illness and life changes following stroke should be recognized as central to the provision of targeted rehabilitation. Our study recommends the content analysis of the free narrations about illness as a method to help the clinicians with a better insight of the patients’ subjective experiences and attitudes towards their condition. The investigation highlights seven key general thematic categories. The main areas to probe in a discussion include information related to the stay in hospital, diagnostics and treatment, change in living conditions, cognitive changes, physical changes, psychological changes, social support and strategies used in order to regain health. These categories may be useful for clinicians to help individuals to clarify their main concerns following a stroke. The interviewer should pay attention to whether or not the patient mentions these topics, which of them he or she places the most emphasis on and how the narration is organized. For example, the clinician should evaluate if the patient understands the medical determinants of his condition and treatment, if he or she manages emotionally and has enough support from the family environment. The clinician should also pay attention to whether or not any topic prevails and if others are missing. Gradually formulating more specific questions that elicit missing data and enquiring further about the topics the patient omits intentionally (e.g. emotional problems) is recommended. In addition, the results of the present study revealed a temporal-causal structure of the narratives consistent with the real order of the events related with the illness. Further studies are needed to verify if this is standard in stroke survivors. If so, when the patient provides a temporally disorganized story the clinician might suspect executive impairment or emotional problems that should be evaluated further [62]. In conclusion, in this study the illness narratives included themes that patients deemed important. These may help health professionals identify topics important for the patients, recognize his or her needs (medical, social, psychological, etc.) and subsequently design a meaningful and effective rehabilitation. Because they can lead to better communication between patients and health professionals, illness narratives can contribute to both the patient’s reintegration into the community and the rehabilitation offered.
Declaration of interest The authors report no conflicts of interest. This investigation was supported by a Mazowieckie Scholarship (Mazowieckie Stypendium Doktoranckie) and funds provided by the Faculty of Psychology, University of Warsaw (BST 500 166/17). We confirm that all patient/personal identifiers have been removed or disguised. The patients/persons described are not identifiable and cannot be identified through the details of their stories.
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