ORIGINAL ARTICLE A place of ones’ own. The meaning of lived experience as narrated by an elderly woman with severe chronic heart failure. A case-study Inger Ekman’ i, PhD, Carola Skott" an, Pho and Astrid Norberg? aN, Ph0 (Professor) astoe of Nurng Gnebog Univery, Gitcorg. and “Deparment of Nursing, med Unter, Und, Sweden Scand J Caring Sci: 2001; 15: 60-65 A place of ones’ own. The meaning of lived experience ‘as narrated by an elderly woman with severe chronic heart failure. A case-study The condition of chronic heart failure often means an increasing need of instivutional care caused by the severity ff such symptoms as fatigue and breathlessness. In this case-study, two interviews with an elderly woman were ‘made at a L-yr interval. A phenomenological hermencutic ‘method was used to interpret the interviews. The firs narrative, recorded in the subject's home, showed a feeling of being at home in the body, inthe room and with health care, In the second narrative, when the informant lived in a nursing home, a feeling of having no neither in the body, the room nor in the relation to the caregivers, was expressed. To deny a patient this place, or { promote a system that does not permit room for pati as whole persons, threatens patients’ as well as caregivers’ identity by conveying that there Is no place for reflection "upon the experience of illness. Keywords: case suiy, elderly, at-homeness, heart failure, iMness narrative, phenomenological hermeneutic, Suhmited 2 Marc 2000, Accepted 24 May 2000 Introduction Chronic heart failure isthe final common pathway for all cardiac disease and is accurately described as a condition rather than a disease. The condition is characterized by shortness of breath, fatigue and exercise intolerance (2). His incidence increases sharply with inereasing age in in Sweden approximately 10% of 80-yt-old people have chronic heart failure (2), The annual mortality rate is 40-60% in people with severe Wester societies, chronic heart failure (1) Research concerming elderly people with chronic heart failure has a strong biomedical orientation and knowledge ‘of how these elderly people experience their disease the care they receive Is limited. Recent research has reported that patienis with chronic heart lal cence their disease as a complex condition comprising both, harmony and well-being, and feelings of frustration (3-5) Care has been described by these elderly patients as being unpredictable and deficient (6, 7). This paper isa part of a larger project aimed at shedding light on what it means 10 experi Comepondome w Inger Ekman, Insite of Nursing, Gtebong University Billerudsgatan 1, $406 75 Gitehong, Sweden, E-mail: ingerskmanosguse « be elderly and 10 live with severe chronic heart failure (5.7) Being ill and providing care imply that interpretations made from different perspectives, patients on the one hhand, and their care ‘ideas about the disease and its treatment. Everyday notions that the ill person has about his or her disease and, treat ‘ment and care are drawn from lived and communicated experience. The ill person makes observations that are at ‘once more limited and much broader than those that form the basis for the knowledge of professional caregivers. Becoming informed of the perspective of the ill person gives invaluable detail to the knowledge that is necessary to give good health care The purpose of this work is to achieve a deeper unider- standing of the meaning of the lived experience of being an elderly woman with chronic heart failure. This is per formed by interpreting two narratives made 1 yr apart, bout the iness and the care the woman receives, When listening to and intezpreting the story we consciously were present as caregivers as well as researchers. This influences the narrative as well as the interpretation of i. O arching aim was to listen to the voice of Vera asa personal voice and also as representing a lived experience of specific evens embecided in local practice and history ‘The method we used has a phenomenological herme- neutical approach and is presented in a separate section, c other, form their own {© 2001 Nowe Collegeof Caring Sciences, Sad J Caring 8The narrator We will call the 79-yrold narrator of the story Vera Svensson. Vera worked asa store clerk and a waitress and has two children and two grandchildren. She is a widow and lived, a1 the time of ing, in a bwo-room, apartment. The building had no elevator, and Vera was nnot able fo leave her apartment unless someone carried hher down the three flights to the ground floor, Vera had severe heart failure and had difficulty catching her breath at the slightest strenuous activity, such as walking a few steps or speaking. One of the side effects of hier medical treatment for heart failure is gout, which caused her a great deal of suffering, Poor circulation resulted in leg uleers and. ecsema, Vera was very proud of her home, which had a pleasant atmosphere and was filled with photographs, paintings and memorabilia. She talked about her furniture and on which occasion in her life each piece was purchased. Vera wanted to keep our conversation on an informal level, using the Swedish less formal way of addressing her visor as Du, rather than the formal Ni. She said that it felt more natural. Her story came aut in a spontaneous stream after she was encour- aged to describe how it feels when she thinks about her anes first me books, Vera’s story ire visit, 1 have problems with my heart ~ there's something wrong 2with a valve. The doctor explained that it doesn’t close harder for the heart 1 feel it when Try to hurry ~ 1 just can’t Sdo it, So f've had to learn what to do, and that’s very Gimportant. When I feel like something's too difficult, 1 Thave to sit stl and take it easy. Then, when f feel a Blittle better and feel like doing something, I do just a little something useful each day that { want to get done. 100 1 feel like I've done something useful. I went through 1a very thorough examination that took 3 weeks, and |2they went through my whole body, bit by bit. There are [wonderful machines nowadays so they can make very |i careful examinations, IS You have to lear 0 live 3 completely; a litle runs back in and makes ty th your illness. That's what I6r've done now and 1 think is going pretty well. It was Lo very hard when I first came home from the hospital Is Being dependent on home care was hard. I've gotten a lot lobetier — I didn’t believe that 1 was going 10 be able 10 20 get up 10 this level. First I could only stand and hold 21 onto chairs and tables and walk near the walls and use my cane. They were going to take away the doorstops and 2give me a walker, but T thought [ should iry to practice 2430 that everything wouldn't be t00 easy 25 My head is clear and I'm very happy for that. 1 have 26triends around here who are senile and that’s so hard © 2001 None College of Caving Sciences, Sand 5 Caring St Experience of chronic heart faire patient 61 270ne of the assistants for home care came to visit and 2Nsaid that they'd figured out that a service home would 29be a good place for me. I said thank you very much but 3014 rather keep living at home for the time being 3H Lean't walk on my feet; they hurt and have bumps Mand they're infected. t's been like this for 2yrs. 1 shave fluids in my body and we have 16 get rid of that. 1 Mhave to take diuretic pills and they say that it's the 3Sacid in the urine that stays in the joints. Spasms in othe legs are awlul ~ it’s what we call the peeping John Hadisease. a Tot at the hospital, 38taking ailments and appreciating 39what’s good. 40 T have to be careful, 1 think that reading is better 4lthan watching TV, so 1 spend a great deal of time 42 reading now. You can call the library and get a book box ABwith 10 books and keep it for 5 weeks, Thar’s 2 lot 44of fun, T have some books mysell, too, and I re-read 4sthem, Thete’s nothing weong at all with re-reading 2 ebook after a few years. I have excellent glasses. My 47 greatest jy, that's books. 48 My son has a habit of coming to me one evening each 49 week. He comes tight alter work. They used to come on s0Sundays, too, but 1 told them they didn’t have 10, Tt St must be hard to always have to visit your mother on. s2Sundays. It shouldn't be necessary. So I tell them they 53 don't have to come every Sunday. 54 One thing is very good with home care. We get real Seat food now and it comes from a restaurant. Imagine Sothat such a big kitchen can make such good food. 1. STrastes so good and there's a lot of variation, a litte S8fresh vegetables every day and dessert if you want it s9Alter that I sit and read a litle more. 1 drink a tittle coffee in the afternoon and maybe watch a bit of 61 TV. 1 like to watch the news and such. Then there's the 2 worrying belore bedtime. I’s the same thing every time 431 lie down = hard 10 try to get my legs to be sil, G41US very hard the first part of the night 10 get any @Ssleep. But I still feel like i's okay wo st up and read if it gets too hard. A doctor said that everybody 47 who works in stores and hospitals has pain in the legs, 68115 called varicose vein ecsema, I told him that It was so itchy and he said 1 was going to have to live with that. Yve gotten different kinds of creams over the TL years and nothing helps. It started with varicose veins, 72Thar’s worse than my other illnesses. I'm very olten Tawake at night. Ws like part of the illness. We've JAtried all soris of creams and Conison indifferent 7Sdoses and I've found that one cream is very good, 76Barnangen's baby cream. It makes the skin very elastic Trand one of the doctors sald, keep using it Weompletely harmless. It stops the skin from drying up, TBM the itching that’s worst, But there's @ lot of me 80 that’s in good shape. My stomach is good and my mind is Silively, yes. I think things are pretty good, 1 don’t Tothink ve learn care of dill62 Bhan etal S2feel worried, 1 really can’t say that 1 do. There have S3been times when I was worried, when it feels like it S4clenches together in my chest and 1 have trouble SSbreathing. | feel like the asthma Is coming. But I fee! 86like I have medicine that helps that and that gives me 8701 of support. 88 Second vist, yr later 8 At the second visit, Vera lived in a nursing home. She 90 vas confined 10 a wheel chait and wore a wig. She sat in 91 the dayroom together with some of the other people who 92live there but wanted instead 10 go to her room for our 93talk, “OF course they're all senile,” she says, ‘94 berter to sit where we won't be disturbed’. The room had 98a few of Vera's own things, a painting and some ‘96 photographs. Vera proudly showed me a lamp that hee son 97 bought for her, a strong lamp equipped with a magnifying 98 glass so that Vera could read, As before, she told her 99 sory in a rush of words. 100 I'm having trouble with my eyes and 1 hear poorly JOU There’s trouble with my kidneys, that's why 1 came 10 12 the hospital. had so many rashes on my skin that I had 1310 go in. They have something to do with the medicine. 1 W4think that the doctors don’t really know what 10 do, WSThey shake their heads when they don't know why 106 something happens 10710’s awful when that happens. The doctor sent me to the 108 dermatology clinic because I had so many rashes. IL was ‘wprashes from all the medicines. They called it medicine 0allergy. They’te giving me more and more medicines. 1 11take 10 pills in the morning, wo in the middle of the 112day and two later on in the day. Then two in the evening 13and another dose even later. How can my kidneys tolerate hatha? N15 There doesn’t seem to be much hope that it will get Hobetier. 1 can figure that out myself, that it's the 17 medicines that cause i. But they don’t dare change it Li8now. Is very painful. t's the first time that this Li9has happened. I've never had any trouble with an inner 10organ before. I lost my heating, I lost my hai, it was 121 very hard, The doctor 1 spoke with said that 1 shouldn't listen 10 any promises, that it wasn’t sure that my hair 123 would grow in again, But, imagine, i's started to come tack, there's a little fuzz now. We saw it last 125 Thursday. Twas very happy when Tsaw that it was coming. 126back a little. How can somebedy treat a person that way? D7 was so sick. Fst they sent me to the dermatology [28clinic. They gave me another medicine and it got much 129 worse. L woke up one morning and I was completely white 150 My skin-was peeling off, was white all over. Then they Istsaid that it must be my kidneys. ‘We'll send her 10 the In2kidney clini” they said. Then I was supposed to come I33t0 a service home, One of the geriatric doctors said [ulthat maybe I could come to a nursing home instead, { ask but it’s T can’t wlerate all the mediclne. 138 myself, what kind of elderly care is it when they move 136me around like that: dermatology clinic, kidney clinic, 137 geriatric hospital, nursing home, service home, where 1384will they send me next? Then we gor notice that it was 139 decided that I would move to the service home. They gave 140 me a nice room there, with a litle kitchenette, 1 could 141 make coffee and there was hot water. we T stayed there for 3 days when I got some new kind 140 rash, They had to stop one of the medicines in a lashucry. Yd been taking it for a week and I wasn’t \4stolerating it, 1 had three differemt kinds of skin 146 medicines during that time, 1 went for a litle wi M47 without rashes but then 1 had 10 go back to the 148 hospital 149 When they moved me I never got wo know where I was, 130 going until the litle bus came. Sometimes { think there's 151 something wrong with our society. We're going to have 13210 send her home,” they said at the hospital. So that 153 meant I would go back to the service home again that 1S4,as my home. They started to move furniture, these two 18Sboys in their cars, a trailer behind each car. Then all Sb of a sudden there was a telephone cal: ‘stop moving the 137 furniture and pictures to the service home, She can’t be 138 here, we don’t have the resources for her." 1591 don’t let myself get happy in advance. I've teamed 160 that. When they came and said they found a wonderful 161 place for me, 1 thought: in a week I'l be gone from 160 here, Now I'm at the hospital ward at the nursing home. 1631 still can’t be sure that I'l be allowed to stay here. 1611'm too well to be allowed 10 live here, So T have 10 be 165 very careful not to say anything stupid. 1 just have 10 166 be thankful for this, 167 I's very good her 168 mood, Not with me, 9are a liule older. 1 feel so sorry for them. 1 pay rent 170 for having a room of my own but I'm not allowed to lock 171 my room, There's a door in my room that goes to another I72.00m where a very sick man lives but it doesn’t have a 73 lock. Can they put a person in a situation like that and 174 not tell them? Yes, obviously they can. It felt very WS unpleasant for 2 week or so but alter that 1 didn't H6care. 1 had such coughing fits last night. 1 try not 10 I77be a bother at night but they heard me. I'm used 10 178 urying not to be a bother. If 1 wasn’t nice to them, Ud 179 be the one to suffer. The way it works Is that If you're 180.2 good patient, you get good care. It shouldn’t be like 1 that. 12 I63call the staff. The others sit there and call out, Is4awful. You can’t do anything for them. “You'll have 10 83 wait until we've cleared the tables.” the stall say. I 186 hurts me so ~ it must anyway be so that a human being, 187 goes first before having to clear the tables, There's 188 till something wrong. in thls society. They don't put 189 human beings frst but sometimes the staff are in a bad nut with others, Some of the ones who Thave a catheter now. i's painful but 1 don't need 10) (© 2001 Nowe Collegeof Caving Sciences, Sad J Carina Se190 Yes, that’s how my life has been. Now here [ sit. 1 191 anyway have my own room and my own shower, and we 192 have a wonderful bathtub. 11s big and it’s made of steel 198 There have to be two of them there when they give me a lot bath, There's some kind of mechanical thing that you lie 19S down on and they push it over the bathtub and lower you 19sdown. If the staff have time, you get to lie in the 1b 19Tfor a little while, Now it looks like they're going 10 198 get a little hair 1 wash again on m 199 hasn't been anything there at all. Vera died 2 months alter the second visit Imagine, there Methods ‘The conversations above were taped and written verbatim. Identifiable portions have been taken away. The stories are ‘written here as Vera told them using her own expressions, Permission 10 conduct the study was granted by the Ethics Committee at Sahlgten’s University Hospital Vera gave informed consent when asked to participate in the study and she was assured of anonymity and confi dentiality Theoretical inspiration in the imerpretation of the narrations Ricoeur's (8-10) Intespretative theory and ethical vision functioned as the theoretical source of inspiration in the Interpretation of the stories. A phenomenological herme- neutical method inspired by Ricocur’s interpretative the ‘ory was used in the analysis (eg. 11, 12) According to Ricocur (8), understanding must be con veyed through explanation. The experience of an indi vidual cannot be conveyed in an immediate way but ust go via symbols, metaphors and interpretations of texts. Further Ricoeur (9) states that speech acts bring, language into the dimension of action and human acting Is intimately articulated by signs, norms, rules and sym bols. Linguistic mediations help us to comprehend history in meaningful action. Ricoeur's ph ‘meneutics focus on the text and not the subject, him or her. A written discourse is a dialectic between explan. ation and understanding and establishes the hermeneutic domain, The text contains a flood of meaning andl has the ability, by is containing an intention, to shed new light fon a person's lived experience. There is a need for us researchers in nursing care to develop knowledge from an ethical platform, and in this work Ricoeufs ethical vision —a wish for a good life with and for others in trustworthy Institutions ~ has been guiding us in the interpretation process. ‘The analysis consisted of naive reading, structural ana~ lysis and comprchensive understan yomenological her © 2001 Noe Collegeof Caring Sclnces, Sand J Cry Sa Bxperience of chronic heart failure patient 63 “The stories were read time and again by the authors with the purpose of deriving an experience from the text and getting a feeling of what the stories were about After the naive reading, the stories were read again, ‘meaning unit by meaning unit, 10 find explanatory steue- tures in the text. A meaning unit consists of one or more sentences that are related through their content. The condensed meaning units were compared according. to differences and similarities, and pattems could be seen from which substhemes were constructed which in tum, through comparisons and contrasts, We also sought linguistic pattems in the text, such as repeated words and words that were more dominant in different parts of the narrative, ed themes, Interpretation process A central theme in the text was different dimensions of “being at home’ and threats to this “being at home’. The first part shows a feeling of being at home in the body lines 1-2, 3-9, 15-16, 25, 33, 80-81), in the room (lines 27-30, 59-61) and with health eare (lines 2-3, 12-14, 33-39, 66-78). However, a gradual threat to this feeling ff being at home emenged {lines 16-18, 20-24), The theme of ‘homelessness’ is formulated in the second story. Now its they (caregivers and doctors) who make decisions about the conditions of Vera's environment (lines. 107, 131-139,149-155), She is existentially homeless (lines 163, 173-174 ) and no feeling of being at home is expressed in terms of her own body (lines 100, 118-121). Instead, a feeling of being an abject and exposed to phar- macological treatment (lines 101114, 128-129, 142-144) and unpredictable moves (lines 149-150, 156-158) between institutions is expressed. Both narratives show a gradual change of word choice in the descriptions of Vera, her disease and representatives of the health care system. In the first story, the word ‘is used often in relation to the illness; ‘we" is often used in relation to the caregivers, The word ‘I’ occurs much less frequently in the second story, but the word “they staff” occurs more often, The illness takes up one-third of the first story, while one-third has to do with relations 10 the caregivers and slightly less than one-third relations with others. In the second story, more than iwo-thirds has to do with relations with caregivers, while the relation ‘with the illness and relations with others account for less than one-thied. Comprehensive understanding and reflections In the first story, we see a woman with an obvious feeling ‘of being at home not anly in her body and her hore but also in her contact with health care. However, a certain threat does appear: worry and fear of being and gradually64 1. Ekman eral becoming more and more hhaving 10 leave her home. In the second story 1 yr later, a feeling of homelessness in her own body and Irom her relations with caregivers dominates. There is no place for Vera, neither for her physical person nor her involvement In the treatment of hher own body. The essence of place does not deal as much ‘with the geographical place and how it looks as svith a place to which one either belongs (insideness) or does not belong (outsideness). According to Kelly (13), the phe: ‘nomenon of being shut out (outsideness) does not have 10 {do with being shut out froma place, a person ea thing but being shut out from relations. Being inside, belonging to a place, means security ~as opposed to bei as opposed to there. The most fundamemial form of insideness is that in which a place is experienced without deliberate and sell-conscious teflection yet is full of significances (14). When one belongs to a place, one experiences it, feels related to it and is a part of i. This feeling of at-homeness can be said to develop ifthe relation between an individual andl the physical, sacal and psy- chological surroundings conveys a feeling of home (15). Research concerning people with dementa’s feeling of athomeness have indicated that the experience of at-homeness and the experience of integrity (wholeness and meaning) are related phenomena (16, 17). Existent sndent pon others and insecure here — | oursideness involves a self-conscious and rellective uninvolvement, an alienation from people and places, homelessness, inauthenticity and 2 sense of not belonging (14: 51). Inauthenticiy might be seen as a feeling of being closed to the world and one’s possibilities and by being governed by ‘anonymous they’(14: 80-81). From an outside perspective, one speaks about a place in the sense of something of which one is not a part, ‘the uere’, In the second siory analysed here, there is frequent use of the word ‘they’ ~‘we’ and ‘’ are very seldom used Ik scems that when Vera was less ill and physically distant from her caregivers she felt a closer relation and a stronger feeling of at-homeness with both herself and the caregiv- crs. When she became more ill she was physically moved to the place of the caregivers, however, and felt an out- sideness from her body and her relation with the care Bivers. She was simply outside inspite of the fact that she was there. To be at home Is to know how to live, how 0 cexist (13). Existing isa sense of being incarnate in a body, ‘The body provides spatiality and location for the self, To say that I am at home means that in the recesses of my heart as well as in the outwardness of my action t feel rooted; inhabitant, inherent, intrincsic, interior (13), When eared for at the nursing-home, the body was nar- rated as being objectified and Vera’s responsibility for her ‘own body was taken away. This led to the expe body being disintegrated and becoming alienated from the sell. This alienation contained a feeling of losing. control and self-confidence. The body in illness speaks @ particular enced language which the self learns ta interpret and respond to (18). H treatment and care are concentrated to the physical body without attention given to the body as it lived, the Ill person, according to Toombs (19), feels him or her reduced to a physical object and consequently becomes dehumanized, In narratives about being at home the relation 10 important others has been shown to be the prime form of at-homeness (17). The relation to things were, however, also described as important to the feeling of being at home; things were talked about as sources of joy. Things had a ‘multidimensional meaning: they wete, for example, des- cribed as tools to be used or bearers af beauty. Picturing, onesel i 1ed {0 be important to the fecling of being at home (17), The fecling of being homeless is further conveyed in Vera's stories about the ‘constant moves between different forms of health care and about the treatment of her different illnesses. One way 10 create a feeling of being at home can be Vera's emphasi zing and admiring the wonderful bathtub at the nursing, home Kleinman (20) says that loss is central in chron Yera was certainly mote ill at the tim rative, but her loss of courage, power and self-confidence does not seem to be a consequence of her illness alone but also of her experience inthe care organization, Ekx etal. (5) show that elderly people with chronic heart failure experienced hospital care as unpredictable and incomprehensible. the environment se ness. ‘of the second nat Methodological considerations and ethics ‘The theme of “homelessness” implies a fet lessness in institutional care as well as i g ol place- the body. The physical move to the different forms of institutional care and the illness becoming worse created this feeling of foutsideness from the room, the body and the relation to the caregivers. Vera was outside inspite ofthe fact that she twas there. This interpretation of Vera's stories, made by us as researchers, involves a feeling of sadness for the care that Vera received, The result of the interpretation has been affected by this feeling. According to Ricoeur (10: 192) itis the feeling that is revealed in the self by the coiher’s suffering, as well as the moral injunetion coming from the other that characterizes solitude. The place Tessness of Vera in the organizat placelessness in her ilhness experience in theoretical con siderations. To deny a patient this place, oF 10 promote a system that does not permit a place for patients’ as whole persons, threatens the patient’s identity and caregivers’ identity as well by conveying thar there is no place lor rellection upon the experience of illness. To listen to Vera's we argue sn 10 view an illness ‘experience from the life ofthe person who isl rather than {rom the petspective of researchers. Ry narrating, listening 9 of care is reflected in (© 2001 None Collegeof Caring Scenes, Som J Caring Stand interpreting, we do something ~ explain, deny or ‘emphasize ~ and we give form and meaning to our world using the narrative (9, 21). The agreement in 2 narrative is of course strongly connected to preunderstanding and the reader’s (listener's) possibility of making the narrative understandable to him or her. A narrative thus always has different possible interpretions. The interpretation. ‘of Vera's stories presented here is one of several possible According to Gudeman & Rivera (22), researchers often convey a communication that deals with convincing the listener that their particular interpretation is correct. Our View is that research should instead be a continuously ongoing conversation between informants, researchers and readers. This view of the research process. has inspired us to present a large portion of these stories to allow the reader the possibility 10 reflect over Vera's stories and our interpretation, The person who reads a story enters into it and participates in the construction of its meaning (9, 21). Readers can even re-wite a story in their imaginations. We end this paper with a new beginning: an invitation to you as readers to participate in the interpretation process, Acknowledgments This study was supported by grants from the Swedish ‘Medical Research Couneil (Grant Nos. B 96-27X-11652-01 A, K 97-27X-11652-02BK, K97-27X-11652-028 and K9B- 27X-11652-03C) and The Swedish Foundation for Health Care Sciences and Allergy Research, References 1 Packer M, Coli J. eds. Consensus recommendations for he management of chtonie heart failure. Am J Cardiol 1999; 83/24): 1A-384, 2 Frikswon H, Sviedsudi K, CaidahlK, Larson B, Obison 1-0, Wilhelmsen L. 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