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Suffering caused by care—elderly patients’ experiences in community care

Suffering caused by care—elderly patients’ experiences in community care Background: Growing old involves many changes in life and implies an increased risks of illness and different forms of disabilities. Life may change in a radical way when a person gets a disease like dementia or moves to a nursing home due to disabilities or needs. In both cases, it often leads to an increased dependency on care where the patient becomes exposed and vulnerable and thereby at a higher risk for experiencing different forms of suffering. Aim: The aim of this study was to elucidate and gain a deeper understanding of elderly patients’ experiences of suffering in relation to community care in nursing homes and home care services. Materials and methods: A lifeworld hermeneutical approach was used. Phenomenological interviews and conversations with an open approach were conducted and analysed with a focus on meanings. Findings: The findings were presented in four main themes; an absence of the other in care, an absence of dialogues, a sense of alienation and a sense of insecurity. The findings in this study revealed that persons who were cared for in nursing homes and home care services sometimes were exposed to an unnecessary suffering. The suffering sometimes was caused by various caring actions, that is, unnecessary suffering. The suffering caused by care that aroused was due to caregiver’s inability to be present, to show their face, and truly meet the patient. Conclusion: Suffering from care increased the elderly patients’ feelings of insecurity, loneliness, and alienation; this seemed to be the foundation for patients’ experiences of being outside a human community. There was a lack of knowledge and understanding about the patient’s lifeworld. Key words: Elderly, care, dementia, lifeworld, patient experiences, suffering (Accepted: 18 October 2013; Published: 20 November 2013) This study, based on patients’ and spouses’ stories of as an embodied experience. Health and illness - encounters with caregivers in community care con- subjective experiences that cannot be reduced texts, intends to illuminate the meaning of suffering merely to the physical attributes of a disease - caused by this care. Patient suffering has been involve both the body and the lifeworld of the described as a basic motive for caring (Eriksson, patient. Philosopher Merleau-Ponty (2002/1945) 1997, 2002). Erikson’s theoretical model describes emphasizes human existence in terms of ‘‘the sub- jective body.’’ The lived body is our ‘‘anchorage’’ in the suffering in three forms: as related to illness, as the world; not only is it something concrete and related to care, and as related to life. The primary biological, but also it is through this bodily being objective of caring is to recognize and alleviate patient suffering, even if the care, to achieve health, that we get access to the world and our everyday life. sometimes may create a temporary, but necessary, Our bodily being is also a social being, and in our suffering caused by care (Dahlberg & Segesten, bodily encounter with other human beings, Le ´vinas 2010), for example when a psychotic person is (2005/1961) points out the face as the key to dis- forced into psychiatric care. covering what a human being is. When we meet the From a caring science perspective, illness or other human being and see the face of the other, we disease, as well as health, need to be understood can learn about our self as human beings but also Correspondence: R. Svanstro ¨ m, University of Sko ¨ vde, Box 408, SE-541 42 Sko ¨ vde, Sweden. Tel: 46 500 44 84 04. Fax: 46 500 44 84 99. E-mail: rune. svanstrom@his.se #2013 R. Svanstro ¨ m et al. This is an Open Access article distributed under the terms of the Creative Commons Attribution 3.0 Unported (CC BY 3.0) 1 License (http://creativecommons.org/licenses/by/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Citation: Int J Qualitative Stud Health Well-being 2013, 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) R. Svanstro ¨m et al. who the other is (p. 39). This relational perspective new life situation, which often is affected by complex seems important in caregiving when it comes to the care needs. To alleviate the person suffering from patient’s subjective experience of suffering, health, these changes, care should include physical, social, and well-being. and existential dimensions (Bergland & Kirkevold, According to Eriksson (1994), suffering caused by 2001). One important aspect in meeting the person’s care occurs when the patient’s dignity and human needs is good communication in the encounter values have been disregarded. Being in need of between nurses, nursing home residents, and their care will most often be associated with a cer- relatives (Andersson, Pettersson, & Sidenwall, 2007; tain degree of suffering (Fagerstro ¨ m, Eriksson, & Berglund, 2007; Westin & Danielson, 2007). Bergbom-Engberg, 1998). The patient’s subjective A study by Gijsberts, van Der Steen, Muller, experience raises important questions in relation to Hertogh, and Deliense (2013) showed that there well-being and suffering. It has been argued that was a lack of communication about spiritual care in recognizing the patient’s own perspective is valuable Dutch nursing homes. Spiritual issues were ad- and that this is crucial for actively including the dressed only informally and were not a part of the patient in care and, thereby, reducing the risk of formal care process. Oosterveld-Vlug et al. (2013) having negative experiences from care in different showed in a study about residents’ experiences of care situations (Dahlberg & Segesten, 2010). Inade- personal dignity that many residents felt discarded quate communication between caregiver and patient and not taken seriously, simply because of their age can create suffering caused by care in the form of a or illness. Waiting for help, being dictated by nurses, sense of insecurity for the patient. and not receiving enough attention could undermine Growing old involves many changes in life and personal dignity. Therefore, it is important that implies increased risks of illness and different forms nurses pay attention to residents’ needs of inter- of disabilities. Life may change in a radical way when subjectivity and to interact in a social context. It is a person gets a disease such as dementia or moves to also important for nurses to reflect on their part and a nursing home due to disabilities or needs. In both responsibility in encounters with nursing home cases, it often leads to an increased dependency on residents (Wadensten, 2007; Westin & Danielson, care (Nordberg et al., 2007), where the patient 2007). Other important aspects for the residents are becomes exposed and vulnerable and thereby at a safety and confirmation as being someone in the higher risk for experiencing different forms of nursing home and having meaningful activities in suffering (Dahlberg & Segesten, 2010). their everyday life (Cook, 2006; Hjaltado ´ ttir & Dementia often results in different forms of suf- Gustafsdo ´ ttir, 2007; Westin & Danielson, 2007). fering (Nyga ˚ rd & Borell, 1998; Nyga ˚ rd & Johansson, Having dementia in moderate or severe stages or 2001; Nyga ˚ rd & Starkhammar, 2003; Phinney moving into a nursing home can most likely affect & Chesla, 2003; Svanstro ¨ m & Dahlberg, 2004; the person’s existence at a deeper level. It can be Svanstro ¨ m & Sundler, 2013). The disease affects assumed that knowledge about the existential di- the person, especially in moderate and severe stages mensions of illness and well-being is essential in care of dementia (SBU, 2008), and it becomes more and to avoid unnecessary suffering. To develop strategies more problematic for the individual to anchor him or that can alleviate suffering, it is important to in- herself in the world, which leads to difficulties in vestigate those existential dimensions of illness and carrying out everyday life routines (Nyga ˚ rd & Borell, well-being from the individual’s perspective. In hu- 1998; Phinney & Chesla, 2003; Svanstro ¨m& man existence, suffering is related to life itself or to Dahlberg, 2004; Svanstro ¨ m & Sundler, 2013). The different diseases that at times cannot be avoided, person with dementia becomes dependent on care but when it comes to suffering related to care, the daily, which in many cases creates problems that cause question of how this kind of suffering can be avoided the person to move to a nursing home. The need for remains. From this point of view, it appears im- care also affects relatives, who often invest great ef- portant to describe how patients experience the forts in taking responsibility for the care of the ill phenomenon of suffering related to care. The aim individual (Almberg, Grafstrom, & Winblad, 1997; ¨ of this study was to elucidate and gain a deeper Hellstrom, Nolan, & Lundh, 2007; Jansson, Nordberg, ¨ understanding of elderly patients’ experiences of & Grafstrom, 2001; O’Shaughnessy, Lee, & Lintern, ¨ suffering in relation to community care in nursing 2010; Soderlund, 2004; Svanstrom & Dahlberg, 2004). ¨ ¨ homes and home-care services. Moving into a nursing home and becoming a resident is a significant change that can influence Materials and methods both the residents and their relatives. It is a challenge for all care workers to promote well-being and In this study, we used a lifeworld hermeneutical alleviate suffering in the context of the person’s approach (Dahlberg, Dahlberg, & Nystrom, 2008/ 2 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care 2001) that supports investigations about phenomena Analysis in our everyday lives. When people who are suffer- The analysis was inspired by Dahlberg et al. (2008/ ing from long-term diseases and simultaneously 2001) and carried out in continuous dialogue with dependent on care are interviewed, there is an the text; in the analysis, the researchers moved back opportunity to capture their everyday life experi- and forth in all interview texts. The analysis started ences (i.e., parts of their lifeworld) (Giorgi, 2009). with the researchers first reading all of the interviews In interviews conducted in earlier studies, we saw to acquire a general sense of the patients’ experi- a suffering that suggested that caring sometimes ences of suffering. In this initial phase, interview could cause suffering. To further illuminate this suf- texts were read several times. The next step in the fering, this study was conducted as part of a project analysis was a search for patterns and nuances of on suffering from care. A secondary analysis was qualitative meanings of suffering. After that, the text performed, which may allow researchers to apply was condensed, and meanings found in the text were a new research question to data already collected discussed and structured in themes. The meaning of (Heaton, 2004). The reuse of data originally col- the themes was described, and four patient stories lected in earlier studies was critically discussed by were constructed to illustrate these meanings of the researcher, who found it unethical not to further suffering caused by care. The patient stories were explore the suffering that called for our attention. formulated based on descriptions in the interviews. The aforementioned studies were approved by the The rationale for creating patient stories were regional ethical committee in Gothenburg, Sweden that the stories could illustrate the data and their ¨ ¨ (L 263-98; O 403-01; O 446-03), and both this meaning in new ways. Another reason was to study and the former studies have followed the facilitate a deeper understanding of the pheno- Declaration of Helsinki. menon being studied. Dahlberg et al. (2008/2001) stress the importance of being creative and open in the analysis in order not to define the findings too Participants and data material quickly. Interviews with participants recruited from primary and community care were analysed in this study. The The four patient stories participants had been guaranteed confidentiality and were informed that participation was voluntary. All In the four stories, the participants were given fictive participants had given their informed consent. names to protect their identity. The four stories were The participants were between 72 and 90 years of used to illustrate lived experiences, even if the age, and they had lived with a long-term disease such meanings described in the themes occurred from as post-stroke impairments or dementia for several more than these four persons’ interviews. The four years or as the spouse of a person with dementia patients illustrated in the stories consist of two men, for several years. The participants, except for the one woman, and one couple. The men, Stig and spouses, had a manifest healthcare need; some were Arnold, lived in a nursing home; the woman, Anna, living in nursing homes, and some were receiving home- lived alone in her apartment; and the couple, Astrid care services from caregivers to manage daily life. and George, lived in an apartment. The data material consisted of qualitative inter- Stig needed daily care; after his leg amputation, an views and conversations with 25 participants. Data exuding wound developed on his stump, which was had been gathered through interviews with patients something that gave him feelings of disgust. Arnold living in nursing homes and with patients with did not need the same amount of care, but he was dementia having a manifest care need and their determined and knew what he wanted, something spouses living together at home. Data had also been that eventually came into conflict with the caregiver’s gathered through conversations with patients with view. Both men have had many contacts with dementia having a manifest care need and living at caregivers every day and even at nights. Anna, who home alone. All interviews and conversations con- had been diagnosed with dementia, was visited by tained detailed and different experiences of when caregivers several times a day and visited a day-care they suffered from care, descriptions which then centre several times a week. She received assistance were used in this analysis. In these interviews and with hygiene, meals, laundry, and cleaning in the conversations, the focus had been on the partici- home. George, also diagnosed with dementia, had pants’ expressions and narratives of lived experi- no ongoing care contacts, as he felt no need for ences from their everyday life. Experiences described them. Instead, it was his wife, Astrid, who was from people with different diseases, as well as from responsible for his care, a care which primarily was shifting contexts, formed a richness of variation in about being near George and answering his repea- the data material. ted questions. The term ‘‘caregiver’’ is used as a Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 3 (page number not for citation purpose) R. Svanstro ¨m et al. collective name for level-two nurses, auxiliary arrive, or even if someone would come to visit. The nurses, registered nurses, and social workers in this sense of not knowing seemed to make the patient study. passive; there was nothing to wait for or prepare for. This was evident in Anna’s story. She did get a strong sense of loneliness when she did not Findings know if anyone was coming. In the conversation The findings reveal that persons who were cared for with the interviewer, it became obvious that home- in nursing homes and home-care services sometimes care services did not intervene and leave a lasting were exposed to unnecessary suffering. The suffer- impression in her lifeworld. ing could be caused by various caring actions, that is, unnecessary suffering. The suffering caused by care Anna: I am alone. (Interviewer: But when you’re that arose seemed to be related to caregivers’ in- in this loneliness, don’t you think that someone ability to be present, to show their face, and to truly will come to me in a few hours, someone I can talk encounter the patient. Suffering from care increased to for a while, and tomorrow I will go to the day the elderly patients’ feelings of insecurity, loneliness, care centre, (No) and meet people there?) No, and alienation; this seemed to be the foundation for I ... live in the present. Unfortunately perhaps, patients’ experiences of being outside of a human but I do. (Interviewer: How far does your present community. There was a lack of knowledge and moment reach?) My present moment is today, and understanding about the patients’ lifeworld. The what happened yesterday maybe, I won’t remem- findings are further described in this article in these ber everything. No, you know, my memory is four themes: an absence of the other in care, an gone. absence of dialogues, a sense of alienation, and a sense of insecurity. When the caregiver only carried out the task without the needs of the person with dementia in focus, there was an obvious risk that the care did not leave any An absence of the other in care sustainable traces in the patient’s world, and a feeling of loneliness became obvious. This feeling tended The encounter between the caregiver and the patient to contribute to a passive life. For the person with seems to bring an indication of care where the dementia who lives alone, the possibility of good caregiver sometimes becomes absent for the patient. meetings often seemed to occur at the day care centre, There was an uncertainty for the patients in the where the patient was in a context that gave meaning. nursing home and sometimes a fear of future meet- This context also was at hand in the person’s home ings in that the patients did not know what to expect but did not seem to be used by the caregivers. in the next meeting. Fixed times for meetings were The couple living at home strived on without any not plentiful, and the patient was provided with little meetings or help from the home-care service. The knowledge about care schedules, yet someone came situation was worsening slowly, and Astrid felt like and helped with various activities of daily living she no longer could leave her husband, not even for a (ADL) tasks. The patients did not know which short while, as, for example, to go to the hairdresser. caregiver would enter the room, which made them In this situation, no one from the home-care service wonder if the caregiver would treat them as a person had visited the couple or tried to find out about the or simply as someone who needs care. That is, will it couple’s situation. No one but the couple’s daughter be a caregiver who is not open to human contact - realized how tired Astrid was, a circumstance that a caregiver who only cares about the task that is made Astrid call and ask for relief. Even after their pre-formulated and about to be performed? Stig talked about how young female caregivers difficult situation was discovered, nobody from the were more occupied with themselves and their own home-care service went to their home for a visit. The appearance rather than taking care of him. This couple did stand alone, with no one investigating if raised profound existential questions about himself, there was any continued need for care. Astrid did not and he did get a feeling of disgust as he lied with the know her rights when she was talking to the exuding wound on his stump. He thought that this interviewer, and he asked what she thought about was the reason why caregivers did not see him and the meeting with the home-care service. did not want to make contact or initiate dialogue Astrid: I have only good things to say. I have noth- with him. As he put it, ‘‘Yes, you don’t really exist; ing to complain about. They will help us ... sigh you become more like a ghost.’’ ... During Whitsun week, I needed to go and For the person with dementia who lived alone, the situation was different. The patient did not know perm my hair and I called and asked if they could when the caregiver, that is, the other one, would come and be here with him while I was away. 4 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care But then, I got him into short-term care and then there was a great and acute risk of him ending up in I could do it. The home care service has never an institution such as a nursing home. Meanwhile, been here, but they would have come. So, I cannot Astrid expressed her situation as follows: ‘‘I’ll try as complain about them. long as I can.’’ The home-care service became aware of the Her husband went to short-term care, but Astrid couple’s difficult situation after Astrid’s cry for could not hand over the responsibility so she visited help. It is common knowledge that with dementia, him. Since he wanted to come home, she brought situations such as this one rarely improve. None- him home again after only 2 days. It appears from theless, the home-care service seemed to neglect this Astrid’s statement that she found it difficult to make problem, had acted as if there was no problem, and demands on the home-care services. It also appeared had not visited the couple. There seemed to be no that there were no meetings to create a dialogue sense of responsibility from the home-care service’s through which needs could be expressed. The data point of view to establish a dialogue with the couple. suggest that there was no ongoing relationship In this case, the responsibility seemed to fall entirely between the couple and the home-care services. on the couple, and especially on Astrid. This means that there were no clear structures in For Anna, who lived alone, there seemed to be no the care, and that it was up to the patient or a spouse satisfactory dialogue either. What characterized car- to assert his or her rights. It seemed to be the ing seemed to be the fast care meetings, where the discretion of the caregivers that determined the caregivers always were on the run to the next patient approach to and the content of care. This gives a or where the caregivers chose to focus on their own picture of a passive home-care organization that did problems, rather than an encounter that could turn not really recognize basic human needs. into a dialogue about the patient’s life situation. Often what was in focus was providing the patient with medicine or food, or quickly tidying the An absence of dialogues apartment. The patient would then be without the Arnold: Well, they do not listen to what I say and important human contact when common tasks were then I do not listen to them either, that is the way performed. it is. Some people you may connect with every Performing tasks together in a dialogue can time you meet them and with others less so. Yes, anchor the patient in a context, in the everyday and with some people you may never connect world. Instead, loneliness became amplified in the with. (Interviewer: But what does this connection contact with the caregiver. There were strong emo- mean to you, when you really feel connected, tions that took over and dominated the patient’s life, when the caregiver really listens to you Arnold?) something that was evident in Anna’s story. Care- Well, but this connection really means a lot to me. givers served her food and then proceeded with their It is worth a great deal. other tasks; as a result, Anna occasionally did not eat. In the conversation with the interviewer, she This conversation took place between Arnold and suddenly became aware of her own plight. the interviewer when they talked about his experi- ences of encounters with the caregivers; it was Anna: No, they are in such a hurry. (Interviewer: experienced as difficult to make contact with the The intention is that they give you food (yes, yes) caregivers. He terms those who he felt were difficult and that you should eat it. But, here it is like you to connect with as ‘‘unjust’’. It seemed that the day just you get food placed in front of you, and you itself decided the form of the meeting, including the don’t eat it.) Well gee, yeah, as long as they are present mood of the caregiver. Both Stig’s and present here .... I eat, of course. Yes. But sitting Arnold’s stories suggest an absence of an ongoing there alone, you know, day in and day out, there is dialogue. It was rather that the dialogue occurred in something terrible. I’ve never been alone all my the moment, when the caregiver was open to a life, as I say. And now. No, I don’t want not be a positive meeting; or, as Arnold described the situa- part of it anymore. Now it is enough. (Interviewer: tion, ‘‘They joke with me to make me happy. They What do you mean when you tell me that?) Yeah listen to me and make jokes with me and then you .... my life can end now. It is enough now. feel as you really are a human being.’’ All of George’s healthcare needs exhausted Astrid. The consequences of an absent dialogue become She frequently struggled with responding to George’s obvious: the patient’s basic care need does not repeated questions. Sometimes, she did get irritated become fulfilled. When caregivers are in a hurry, and lost her patience with him, but repented shortly the patient’s sublime voice may become only a thereafter. She stood alone in her care work, and whisper that no one listens to. Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 5 (page number not for citation purpose) R. Svanstro ¨m et al. This shows the value of the caregiver in seeing and and dealt with different tasks. The caregiver may be acknowledging the patient; this creates the condi- in a hurry and will not invite the patient to tions for a dialogue. Stig, who lived in a nursing participate in the tasks. Caregivers said that they home, said the following. had much to do, and it was difficult to make any demands on them about the content of the visits. Stig: Yes it is, yes it is the connection, the con- Here, feelings of loneliness became as obvious for nection through the eyes. It is in the manner they the patient living at home as for the patient in a offer themselves, they are sympathetic above all, nursing home. Anna talked about the brief meetings they want to try to understand me, that says it all with the caregivers and that she did not feel involved really. in what happened in the home. The caregiver was a welcome companion, but the lack of conversation Human dialogue includes both speech and inter- about the patient’s lifeworld created strong feelings subjectivity where both interlocutors see the other’s of loneliness and alienation. When Anna talked face. When a person’s face was visible, it showed his about her life and youth, her feelings of loneliness or her interlocutor who he or she is, and in the other were reduced, but when the pace of the caregivers one’s face, the person can see who his or her was fast and expressed a heavy workload, this often interlocutor is. This contributes to a type of con- did not leave any room for her stories. firmation and thus a sense of human identity. Both a person with dementia with a manifest care need who Anna: But they are in such a hurry when they lives alone and a couple where one person has come. They will never sit down like this and talk to dementia with a manifest care need have difficulties me; instead, they are running in and out and ... with their identity. This also applies to people who and vacuuming and cleaning and .... They are not have moved to nursing homes. When they move real company and I like, I like to converse. You from their home, they are outside of their usual know? (Interviewer: Yes, yes, I know that. [Anna context. There will be new procedures and new laughs]. But what is it like for you, when they do environments, which can create feelings of insecur- not stay?) Well yes, I know, but they have so much ity, loneliness, and alienation. Because of this, the to do, they cannot stay and converse with me. occurrence of intersubjectivity between caregivers I know this; they have so much to do, so I do not and patients was of great importance for these demand it ... but I miss it. patients. The couple also has had a hard time; they easily became isolated in their home, making them feel A sense of alienation alienated. The planning of the care for the couple was non-existent, and the home-care services were Being an active member of society becomes difficult not only for persons with dementia with a manifest not present; no one from the home-care service had care need but also for their partners. Sustaining life been able to help the couple. They did not get any itself may become more than enough. For those who support and were left in solitude, and when the care lived in nursing homes, there were also limited was absent, their loneliness and vulnerability were possibilities for an active life in society. Disability obvious, despite them being two persons who were limited the possibility to be in one’s known contexts, together. and the caring approach may also contribute to a (Interviewer: What’s most negative about the dis- sense of alienation. The feeling of being outside of a ease?) Astrid: sigh ... Well yes, it is that you become human communion became strong when the care in lonely. (Interviewer: What do you mean, lonely?) a nursing home seemed to be, above all, about tasks Yes, for example, I have to give up attending my to be completed. In Stig’s story, this was obvious needlecraft club meetings, and ... now for example when he shared examples of how caregivers came to when bingo starts, if he doesn’t want to go, then his room to perform some tasks without addressing I have to stay home. That’s the way it is. him, consequently not acknowledging him as a person. Stig would like to talk to his caregivers, but this did not occur often. The feeling of being alone became powerful even though he met caregivers A sense of insecurity frequently. In his words, ‘‘Well, you feel lonely, very lonely, well I say, you really do.’’ The stories reveal insecurity among the patients. The person with dementia with a manifest care Stig, for example, had no opportunity to choose the need who lives alone was in a similar situation. The outcomes of his encounters. One day, there was a visits from the home-care services were often short caregiver who sees and confirms him, and the next 6 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care time there was another who did not give him any Discussion confirmation at all; he became a nobody. Arnold told The findings in this study reveal that persons who are similar stories: At one time when he had to go to the cared for in a nursing home and persons with bathroom in the night, he was denied this. By being dementia with a manifest care need being cared for stubborn and getting angry, he did get help in the at home sometimes were exposed to an unnecessary end. suffering, a suffering caused by care. This increased the patients’ experiences of insecurity, loneliness, and Arnold: Then I thought: ‘Now you have to speak alienation, and this can be understood as experiences up’. (Interviewer: How did it go?) Well it worked of feelings of standing outside of a human community. out in a good way in the end, but it’s hard not The basis of the experiences was encounters without being listened to. (Interviewer: Yes, but what did someone to talk to. The patients in this study ex- you do to get help?) I told them off, and then I got perienced not being secure about when, or if, the help, but it was sad that they did not listen to me caregiver would open an avenue for communion. In at once. fact, no one can know truly when this could happen, but for these actual patients, the unclear and insecure In Anna’s case, there were similar experiences of an situation became more serious because of their unsecure everyday life. She was not given support in vulnerability and their dependence on help from performing the everyday chores and in actively using caregivers. Suffering from care like for these patients her home. Her life became passive with feelings of has been described elsewhere, as, for example, in loneliness and insecurity. One way to escape from hospital contexts (Berglund, Westin, Svanstro ¨ m, & all of this was by going to bed and sleeping. This Johansson Sundler, 2012). Unnecessarily suffering inactive life affected her health negatively. In the case from care seems to appear in different caring situa- of George and Astrid, there was a similar problem. tions, and not solely in nursing homes or in home-care Their existence was fragile. If something happened services. to Astrid’s health, this would mean that George If there is a culture of care that does not allow the would not cope at home on his own. This created caregiver to confirm the patient in every single care an unsafe situation for both Astrid and George. He action, there may be a lack of a holistic view on the would probably end up in an institution very quickly care and at the same time a lack of respect for human if Astrid’s care should be discontinued. The dialogue dignity. Kase ´n, Nordman, Lindholm, and Eriksson with the home-care services did not exist, and any (2008) argued that a rigid care organization with caregiving that would support the couple and create an unreflective attitude of the caregiver in his or her basic security in their everyday life was absent. This encounters with the patient can create suffering left the spouse with overwhelming feelings of grief caused by care. The basis for this lack of caring over a responsibility that she knew she could not was the caregiver’s view of humanity in which the keep. patient sometimes became an object. To be seen as an object, without being involved in a dialogue, may (Interviewer: What do you know about the future create a feeling of being alone and isolated in which with this disease and life with this disease?) Astrid: the patient does not get invited into a human Well, the only thing I know is that I will go on like community. The findings in this study showed that this as long as I can manage. Then, and then there everyday life became insecure for the participants, is nothing to choose about: he has to move to a disempowering them, which made their everyday care institution. (Interviewer: You mean that he has to move somewhere else then?) Well, first of life become passive. Life was occupied with feelings all, he may have to move into the short-term care. of loneliness, a lack of identity, and a sense of So they have told me, I only have to call them. alienation, created by the absence of confirmatory care. This weakened the patients’ and even their But, as long as I can manage I will try. (Inter- partners’ identities and raised questions about if viewer: For how long will you manage?) Well, I do and how the care can change the culture into a not know. (Interviewer: What are your feelings on facilitating organization that enables the patient to a day like this?) sigh ... Well, today I feel pretty good, but sometimes it’s hopeless. (Interviewer: feel secure and truly at home in their home. In this For how long have you had these feeling of study, patients experienced a sense of alienation hopelessness?) sigh, Well, maybe for about six when feeling lonely and not connected with or months. (Interviewer: What is it like for you to live confirmed by the caregiver. When the other’s face with this kind of despair, for such a long time?) is absent in the caring encounter, the patient Well, there is no quality of life, it’s not ... [Astrid may not feel confirmed as a human being. This shortly thereafter burst into tears]. can give a non-existent, intersubjective dialogue. Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 7 (page number not for citation purpose) R. Svanstro ¨m et al. Similar to the findings in this study, Dahlberg confirmation; it was found to be unpredictable. The (2007) describes involuntary loneliness as a feeling confirmation may occur in the next encounter with of standing alone and outside of connectedness to the caregiver, but it could be absent as well. Patients others. When connecting with others, this loneliness may not know when the caregiver will appear, or if can disappear. the caregiver will invite them into an intersubjective A way to confirm others is by showing the face dialogue. The caregivers can be somewhere near when meeting other persons (e.g., to be truly without truly paying attention to and acknowledging present). This was highlighted by Le ´vinas (2005/ the patient. This means that the patient may still be 1961), who meant that the face gives us the feeling lonely, even if the caregiver is present. recognition of the other, whose otherness then will Dahlberg (2007) describes how one can feel lonely, appear. The recognition of the other’s otherness will even if there are other people around. Being appear in the moment. This was not instant and involuntarily lonely and not belonging to anyone needs constant replenishment to be kept alive, or as are ways of ‘‘not being’’. This can be compared to Le ´vinas (2005/1961) put it, ‘‘The I is not a being feelings of standing outside the human community, that always remains the same, but is the being whose as found in this study. existing consists in identifying itself, in recovering its The caring relationship is important to avoid identity throughout all that happens to it’’ (p. 36). unnecessary suffering. Human contact and feeling To have an identity means to be at home with oneself connected with the caregiver are important. In this study, suffering was experienced when the caregiver and to be an ‘‘I can.’’ The patient’s own identity is an important part of was absent in the care of the patient. A study by caring for patients with dementia. To have an Custers, Westerhof, Kuin, and Riksen-Waraven identity is, according to Kitwood (1997), to know (2010) showed that residents in nursing homes who one is; it involves maintaining a sense of needed fulfilment in caring relationships and that continuity with the past and some kind of consis- the caring relationships contributed to the residents’ tency across the course of one’s present life. Attach- well-being. Such caring relationships were built ment is another aspect of importance in care. The upon dialogue between the patient and the caregiver. loss of primary attachment can undermine one’s Caring relationships also have been identified as sense of security. These aspects must therefore be important in the care of patients suffering from suggested as important in the care of people suffer- dementia. A study by Rundqvist and Severinsson ing from dementia and probably also in the care of (1999) showed three factors that are important for a patients in nursing homes. Brown and Shlosberg caring relationship: touch, mutual confirmation, and (2006) have concluded that the occurrence of the caregiver’s values in the caring culture. The way attachment behaviours among people with dementia that caregivers communicate in the encounter may who live at home with a caregiver is not well therefore be essential to avoid unnecessary suffering. understood, which is an important area for further Building a dialogue based on encounters between research. The patients in this study had difficulties the patients and the caregivers is probably essential with presenting their needs, especially when it came to avoiding experiences of insecurity, loneliness, and to expressing their desires. Their sublime wish, alienation, but these mutual encounters built upon about the possibility to encounter the caregiver to dialogue seemed to be rare in this study. The lack of feel confirmed and know that you are an accounted mutuality will probably obstruct the confirmation of human being, was an unfulfilled desire. This left a the patient as an individual, which may be required broken identification process where the person to maintain a human identity. The care organization seemed to have difficulties in grasping his or her and the caregiver did not give the patient enough identity and personhood. space and time that were needed to be a human According to Le ´vinas (2005/1961), our original among humans, that is, a sense of belonging in a identity is the basis for our existence. The finding in human community (Bengtsson, 1998). All of this led this study points to a culture of efficiency and to inadequate care. Malmedal, Ingebrigtsen, and rationality in the care that seems to focus more on Saveman (2009) showed in a Norwegian study of 16 specific tasks and that the care was performed in a nursing homes a high extent of different types of pragmatic way. This may minimizes opportunities inadequate care. The high extent confirmed that the for the caregiver to truly encounter the patient and result was not isolated uncaring acts, but rather was to meet their sublime wish, which could give the a common part of life in these nursing homes. possibility for the patient to feel valued as a human Although the most common uncaring acts were of being and to be someone, an ‘‘I can.’’ During the an emotional and negligent character, such as talking encounter with the caregiver, the patient cannot disrespectfully or ignoring the patients, in some ways choose whether or when the encounter will lead to the patients were exposed to unnecessary suffering. 8 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care Andersson, I., Pettersson, E., & Sidenwall, B. (2007). Daily life Conclusion and clinical implications after moving into a care home*Experiences from older This study reveals that persons with dementia with a people, relatives and contact persons. Journal of Clinical Nursing, 16, 17121718. manifest care need who live at home and people who Bengtsson, J. (1998). Phenomenological excursions: The human being are cared for in a nursing home experience suffering. and science from a lifeworld perspective [Fenomenologiska Suffering from care increased the elderly patients’ utflykter: ma ¨nniska och vetenskap ur ett livsva ¨rldsperspektiv]. feelings of insecurity, loneliness, and alienation; this Gothenburg, Sweden: Daidalos. seemed to be the foundation for patients’ experi- Bergland, A., & Kirkevold, M. (2001). Thriving*A useful theoretical perspective to capture the experience of well- ences of being outside of a human community. being among frail elderly in nursing homes. Journal of The suffering sometimes was caused by various Advanced Nursing, 36, 426432. caring actions, that is, it was unnecessary suffering. Berglund, A. L. (2007). Satisfaction with caring and living The suffering caused by care that arose was due to conditions in nursing homes: Views of elderly persons, next caregivers’ inability to be present, to show their face, of kin and staff members. International Journal of Nursing and to truly meet the patient. Practice, 13,4651. Berglund, M., Westin, L., Svanstro ¨ m, R., & Johansson Sundler, There was a lack of knowledge and understanding A. (2012). Suffering caused by care*patients’ experiences about the patient’s lifeworld. The care organization in hospital settings. International Journal of Qualitative Studies seemed deficient and did not rest on patients’ on Health and Well-being, 7, 18688. doi: 10.3402/qhw.v7i0. perspectives; that is, it was not based on a holistic approach where a patient’s lifeworld is taken into Brown, C. J., & Shlosberg, E. (2006). Attachment theory and dementia: A review of the literature. Aging & Mental Health, account. To avoid unnecessary suffering, it is im- 10, 134142. portant that there is a focus on caring directed to the Cook, G. (2006). The risk to enduring relationships following the actual meeting between the patient and the caregiver, move to a care home. International Journal of Older People as well as on what this means for the patient’s Nursing, 1, 182185. experience of well-being in terms of security, com- Custers, A. F., Westerhof, G. J., Kuin, Y., & Riksen-Waraven, M. (2010). Need fulfillment in caring relationships: Its relation munity, and belonging. To accomplish this, some with wellbeing of residents in somatic nursing homes. Aging important actions probably are required, such as & Mental Health, 6, 731739. nursing guidance for both staff and managers, to Dahlberg, K. (2007). The enigmatic phenomenon of loneliness. highlight the importance of each encounter with the International Journal of Qualitative Studies on Health and Well- patient. By working with a moral care organization being, 2(4), 195207. Dahlberg, K., Dahlberg, H., & Nystro ¨ m, M. (2008). Reflective that can promise dialogue between patients and lifeworld research (2nd ed.). Lund, Sweden: Studentlitteratur. caregivers, patients probably will be supported in Dahlberg, K., & Segesten, K. (2010). Health and caring in finding their own rhythm of life, which includes a theory and practice [Ha ¨ lsa och va ˚ rdande i teori och praxis]. sense of belonging somewhere with someone. This Stockholm, Sweden: Natur och kultur. would certainly help them to carry out various life Eriksson, K. (1994). The suffering human being [Den lidande ma ¨ nniskan]. Stockholm, Sweden: Liber. projects, which in this context, for example, could Eriksson, K. (1997). Understanding the world of the patient, mean inviting someone for a talk and a cup of coffee the suffering human being: The new clinical paradigm or being invited for a walk with someone that may from nursing to caring. Advanced Practice Nurse Quarterly, include an exchange of feelings and thoughts. The 3(1), 813. organization, in this way, would support a healthy Eriksson, K. (2002). Caring science in a new key. Nursing Science process in which the patient’s sense of well-being can Quarterly, 15(1), 6165. Fagerstrom, L., Eriksson, K., & Bergbom-Engberg, I. (1998). be promoted. The patients perceived caring needs as a message of suffering. Journal of Advanced Nursing, 28(5), 978987. Gijsberts, M. J, van Der Steen, J. T, Muller, M. T, Hertogh, Conflict of interest and funding C. M., & Deliense, L. (2013). Spiritual end of life care in The authors declare no conflicts of interests with Dutch nursing homes: An ethnographic study. Journal of the American Medical Directors Association, 14(9), 679684. respect to the authorship and/or publications of this Giorgi, A. (2009). The descriptive phenomenological method in article. The study was conducted with support from psychology: A modified Husserlian approach. Pittsburgh, PA: the Skaraborg Institute for Research and Develop- Duquesne University Press. ment and University of Sko ¨ vde, Sweden. Heaton, J. (2004). Reworking qualitative data. London: Sage. Hellstro ¨ m, I., Nolan, M., & Lundh, U. (2007). Sustaining ‘‘couplehood’’: Spouses’ strategies for living positively with dementia. Dementia, 6(3), 383409. Hjaltado ´ ttir, I., & Gustafsdo ´ ttir, M. (2007). Quality of life in References nursing homes: Perceptions of physically frail elderly resi- dents. Scandinavian Journal of Caring Sciences, 21,4855. Almberg, B., Grafstro ¨ m, M., & Winblad, B. (1997). Caring for Jansson, W., Nordberg, G., & Grafstro ¨ m, M. (2001). Patterns of a demented elderly person*Burden and burnout among elderly spousal caregiving in dementia care: An observational caregiving relatives. Journal of Advanced Nursing, 25, 109 116. study. Journal of Advanced Nursing, 34(6), 804812. Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 9 (page number not for citation purpose) R. Svanstro ¨m et al. Kase ´n, A., Nordman, T., Lindholm, T., & Eriksson, K. (2008). Oosterveld-Vlug, M. G., Pasman, H. R., van Gennip, I. E., When the patient suffers from care*carers portrayal of Muller, M. T., Willems, D. L., & Onwuteaka-Philipsen, patients’ care suffering [Da ˚ patienten lider av va ˚ rden* B. D. (2013). Dignity and the factors that influence it va ˚ rdares gestaltning av patientens va ˚ rdlidande]. Vard i according to nursing home residents: A quality interview Norden, 88(28), 48. study. Journal of Advanced Nursing. doi: 1111/jan.12171. Kitwood, T. (1997). The experience of dementia. Aging & Mental O’Shaughnessy, M. O., Lee, K., & Lintern, T. (2010). Changes in Health, 1,1322. the couple relationship in dementia care: Spouse carers’ Le ´vinas, E. (2005). Totality and infinity: An essay on exteriority. experiences. Dementia, 9(2), 237258. Pittsburgh, PA: Duquesne University Press. (Original work Phinney, A., & Chesla, C. A. (2003). The lived body in dementia. published in 1961) Journal of Aging Studies, 17, 283299. Malmedal, W., Ingebrigtsen, O., & Saveman, B. I. (2009). Rundqvist, E. M., & Severinsson, E. I. (1999). Caring relation- Inadequate care in Norwegian nursing homes*as reported ships with patient suffering from dementia*an interview by nursing staff. Scandinavian Journal of Nursing Sciences, 23, study. Journal of Advanced Nursing, 29, 800807. 231242. SBU. (2008). Dementia*etiology and epidemiology, a systematic Merleau-Ponty, M. (2002). Phenomenology of perception. London: review (Vol. 1). Stockholm: Swedish Council on Health Routledge Classics. (Original work published in 1945) Technology Assessment. Nordberg, G., Wimo, A., Jo ¨ nsson, L., Ka ˚ reholt, I., Sjo ¨ lund So ¨ derlund, M. (2004). As hit by a hurricane: Relatives’ lives when a B. M., Lagergren, M., & von Strauss, E. (2007). Time use loved one has dementia [Som drabbad av en orkan, anhorigas and costs of institutionalised elderly persons with or without tillvaro na ¨renna ¨ rsta ˚ ende drabbas av demens]. PhD diss. dementia: Results from the Nordanstig cohort in the ˚ ˚ Abo, Finland: Abo Akademis Fo ¨ rlag. Kungsholmen Project*a population based study in Sweden. Svanstro ¨ m, R., & Dahlberg, K. (2004). Living with dementia International Journal of Geriatric Psychiatry, 22, 639648. yields a heteronomous and lost existence. Western Journal of Nyga ˚ rd, L., & Borell, L. (1998). A life-world altering meaning: Nursing Research, 26(6), 671687. Expressions of the illness experience of dementia in everyday Svanstro ¨ m, R., & Sundler, A. J. (2013, July 11). Gradually losing life over 3 years. The Occupational Therapy Journal of one’s foothold*a fragmented existence when living alone Research, 18(2), 109136. with dementia. Dementia. doi: 10.1177/1471301213494510 Nyga ˚ rd, L., & Johansson, M. (2001). The experience and Wadensten, B. (2007). Life situation and daily life in a nursing management of temporality in five cases of dementia. home as described by nursing home residents in Sweden. Scandinavian Journal of Occupational Therapy, 8,8595. International Journal of Older People Nursing, 2, 180188. Nyga ˚ rd, L., & Starkhammar, S. (2003). Telephone use among non-institutionalized persons with dementia living alone: Westin, L., & Danielson, E. (2007). Encounters in Swedish Mapping out difficulties and response strategies. Scandina- nursing homes: A hermeneutic study about residents’ vian Journal of Caring Science, 17, 239249. experiences. Journal of Advanced Nursing, 60, 172180. 10 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png International Journal of Qualitative Studies on Health and Well-Being Taylor & Francis

Suffering caused by care—elderly patients’ experiences in community care

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Taylor & Francis
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© 2013 R. Svanström et al.
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1748-2631
DOI
10.3402/qhw.v8i0.20603
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Abstract

Background: Growing old involves many changes in life and implies an increased risks of illness and different forms of disabilities. Life may change in a radical way when a person gets a disease like dementia or moves to a nursing home due to disabilities or needs. In both cases, it often leads to an increased dependency on care where the patient becomes exposed and vulnerable and thereby at a higher risk for experiencing different forms of suffering. Aim: The aim of this study was to elucidate and gain a deeper understanding of elderly patients’ experiences of suffering in relation to community care in nursing homes and home care services. Materials and methods: A lifeworld hermeneutical approach was used. Phenomenological interviews and conversations with an open approach were conducted and analysed with a focus on meanings. Findings: The findings were presented in four main themes; an absence of the other in care, an absence of dialogues, a sense of alienation and a sense of insecurity. The findings in this study revealed that persons who were cared for in nursing homes and home care services sometimes were exposed to an unnecessary suffering. The suffering sometimes was caused by various caring actions, that is, unnecessary suffering. The suffering caused by care that aroused was due to caregiver’s inability to be present, to show their face, and truly meet the patient. Conclusion: Suffering from care increased the elderly patients’ feelings of insecurity, loneliness, and alienation; this seemed to be the foundation for patients’ experiences of being outside a human community. There was a lack of knowledge and understanding about the patient’s lifeworld. Key words: Elderly, care, dementia, lifeworld, patient experiences, suffering (Accepted: 18 October 2013; Published: 20 November 2013) This study, based on patients’ and spouses’ stories of as an embodied experience. Health and illness - encounters with caregivers in community care con- subjective experiences that cannot be reduced texts, intends to illuminate the meaning of suffering merely to the physical attributes of a disease - caused by this care. Patient suffering has been involve both the body and the lifeworld of the described as a basic motive for caring (Eriksson, patient. Philosopher Merleau-Ponty (2002/1945) 1997, 2002). Erikson’s theoretical model describes emphasizes human existence in terms of ‘‘the sub- jective body.’’ The lived body is our ‘‘anchorage’’ in the suffering in three forms: as related to illness, as the world; not only is it something concrete and related to care, and as related to life. The primary biological, but also it is through this bodily being objective of caring is to recognize and alleviate patient suffering, even if the care, to achieve health, that we get access to the world and our everyday life. sometimes may create a temporary, but necessary, Our bodily being is also a social being, and in our suffering caused by care (Dahlberg & Segesten, bodily encounter with other human beings, Le ´vinas 2010), for example when a psychotic person is (2005/1961) points out the face as the key to dis- forced into psychiatric care. covering what a human being is. When we meet the From a caring science perspective, illness or other human being and see the face of the other, we disease, as well as health, need to be understood can learn about our self as human beings but also Correspondence: R. Svanstro ¨ m, University of Sko ¨ vde, Box 408, SE-541 42 Sko ¨ vde, Sweden. Tel: 46 500 44 84 04. Fax: 46 500 44 84 99. E-mail: rune. svanstrom@his.se #2013 R. Svanstro ¨ m et al. This is an Open Access article distributed under the terms of the Creative Commons Attribution 3.0 Unported (CC BY 3.0) 1 License (http://creativecommons.org/licenses/by/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Citation: Int J Qualitative Stud Health Well-being 2013, 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) R. Svanstro ¨m et al. who the other is (p. 39). This relational perspective new life situation, which often is affected by complex seems important in caregiving when it comes to the care needs. To alleviate the person suffering from patient’s subjective experience of suffering, health, these changes, care should include physical, social, and well-being. and existential dimensions (Bergland & Kirkevold, According to Eriksson (1994), suffering caused by 2001). One important aspect in meeting the person’s care occurs when the patient’s dignity and human needs is good communication in the encounter values have been disregarded. Being in need of between nurses, nursing home residents, and their care will most often be associated with a cer- relatives (Andersson, Pettersson, & Sidenwall, 2007; tain degree of suffering (Fagerstro ¨ m, Eriksson, & Berglund, 2007; Westin & Danielson, 2007). Bergbom-Engberg, 1998). The patient’s subjective A study by Gijsberts, van Der Steen, Muller, experience raises important questions in relation to Hertogh, and Deliense (2013) showed that there well-being and suffering. It has been argued that was a lack of communication about spiritual care in recognizing the patient’s own perspective is valuable Dutch nursing homes. Spiritual issues were ad- and that this is crucial for actively including the dressed only informally and were not a part of the patient in care and, thereby, reducing the risk of formal care process. Oosterveld-Vlug et al. (2013) having negative experiences from care in different showed in a study about residents’ experiences of care situations (Dahlberg & Segesten, 2010). Inade- personal dignity that many residents felt discarded quate communication between caregiver and patient and not taken seriously, simply because of their age can create suffering caused by care in the form of a or illness. Waiting for help, being dictated by nurses, sense of insecurity for the patient. and not receiving enough attention could undermine Growing old involves many changes in life and personal dignity. Therefore, it is important that implies increased risks of illness and different forms nurses pay attention to residents’ needs of inter- of disabilities. Life may change in a radical way when subjectivity and to interact in a social context. It is a person gets a disease such as dementia or moves to also important for nurses to reflect on their part and a nursing home due to disabilities or needs. In both responsibility in encounters with nursing home cases, it often leads to an increased dependency on residents (Wadensten, 2007; Westin & Danielson, care (Nordberg et al., 2007), where the patient 2007). Other important aspects for the residents are becomes exposed and vulnerable and thereby at a safety and confirmation as being someone in the higher risk for experiencing different forms of nursing home and having meaningful activities in suffering (Dahlberg & Segesten, 2010). their everyday life (Cook, 2006; Hjaltado ´ ttir & Dementia often results in different forms of suf- Gustafsdo ´ ttir, 2007; Westin & Danielson, 2007). fering (Nyga ˚ rd & Borell, 1998; Nyga ˚ rd & Johansson, Having dementia in moderate or severe stages or 2001; Nyga ˚ rd & Starkhammar, 2003; Phinney moving into a nursing home can most likely affect & Chesla, 2003; Svanstro ¨ m & Dahlberg, 2004; the person’s existence at a deeper level. It can be Svanstro ¨ m & Sundler, 2013). The disease affects assumed that knowledge about the existential di- the person, especially in moderate and severe stages mensions of illness and well-being is essential in care of dementia (SBU, 2008), and it becomes more and to avoid unnecessary suffering. To develop strategies more problematic for the individual to anchor him or that can alleviate suffering, it is important to in- herself in the world, which leads to difficulties in vestigate those existential dimensions of illness and carrying out everyday life routines (Nyga ˚ rd & Borell, well-being from the individual’s perspective. In hu- 1998; Phinney & Chesla, 2003; Svanstro ¨m& man existence, suffering is related to life itself or to Dahlberg, 2004; Svanstro ¨ m & Sundler, 2013). The different diseases that at times cannot be avoided, person with dementia becomes dependent on care but when it comes to suffering related to care, the daily, which in many cases creates problems that cause question of how this kind of suffering can be avoided the person to move to a nursing home. The need for remains. From this point of view, it appears im- care also affects relatives, who often invest great ef- portant to describe how patients experience the forts in taking responsibility for the care of the ill phenomenon of suffering related to care. The aim individual (Almberg, Grafstrom, & Winblad, 1997; ¨ of this study was to elucidate and gain a deeper Hellstrom, Nolan, & Lundh, 2007; Jansson, Nordberg, ¨ understanding of elderly patients’ experiences of & Grafstrom, 2001; O’Shaughnessy, Lee, & Lintern, ¨ suffering in relation to community care in nursing 2010; Soderlund, 2004; Svanstrom & Dahlberg, 2004). ¨ ¨ homes and home-care services. Moving into a nursing home and becoming a resident is a significant change that can influence Materials and methods both the residents and their relatives. It is a challenge for all care workers to promote well-being and In this study, we used a lifeworld hermeneutical alleviate suffering in the context of the person’s approach (Dahlberg, Dahlberg, & Nystrom, 2008/ 2 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care 2001) that supports investigations about phenomena Analysis in our everyday lives. When people who are suffer- The analysis was inspired by Dahlberg et al. (2008/ ing from long-term diseases and simultaneously 2001) and carried out in continuous dialogue with dependent on care are interviewed, there is an the text; in the analysis, the researchers moved back opportunity to capture their everyday life experi- and forth in all interview texts. The analysis started ences (i.e., parts of their lifeworld) (Giorgi, 2009). with the researchers first reading all of the interviews In interviews conducted in earlier studies, we saw to acquire a general sense of the patients’ experi- a suffering that suggested that caring sometimes ences of suffering. In this initial phase, interview could cause suffering. To further illuminate this suf- texts were read several times. The next step in the fering, this study was conducted as part of a project analysis was a search for patterns and nuances of on suffering from care. A secondary analysis was qualitative meanings of suffering. After that, the text performed, which may allow researchers to apply was condensed, and meanings found in the text were a new research question to data already collected discussed and structured in themes. The meaning of (Heaton, 2004). The reuse of data originally col- the themes was described, and four patient stories lected in earlier studies was critically discussed by were constructed to illustrate these meanings of the researcher, who found it unethical not to further suffering caused by care. The patient stories were explore the suffering that called for our attention. formulated based on descriptions in the interviews. The aforementioned studies were approved by the The rationale for creating patient stories were regional ethical committee in Gothenburg, Sweden that the stories could illustrate the data and their ¨ ¨ (L 263-98; O 403-01; O 446-03), and both this meaning in new ways. Another reason was to study and the former studies have followed the facilitate a deeper understanding of the pheno- Declaration of Helsinki. menon being studied. Dahlberg et al. (2008/2001) stress the importance of being creative and open in the analysis in order not to define the findings too Participants and data material quickly. Interviews with participants recruited from primary and community care were analysed in this study. The The four patient stories participants had been guaranteed confidentiality and were informed that participation was voluntary. All In the four stories, the participants were given fictive participants had given their informed consent. names to protect their identity. The four stories were The participants were between 72 and 90 years of used to illustrate lived experiences, even if the age, and they had lived with a long-term disease such meanings described in the themes occurred from as post-stroke impairments or dementia for several more than these four persons’ interviews. The four years or as the spouse of a person with dementia patients illustrated in the stories consist of two men, for several years. The participants, except for the one woman, and one couple. The men, Stig and spouses, had a manifest healthcare need; some were Arnold, lived in a nursing home; the woman, Anna, living in nursing homes, and some were receiving home- lived alone in her apartment; and the couple, Astrid care services from caregivers to manage daily life. and George, lived in an apartment. The data material consisted of qualitative inter- Stig needed daily care; after his leg amputation, an views and conversations with 25 participants. Data exuding wound developed on his stump, which was had been gathered through interviews with patients something that gave him feelings of disgust. Arnold living in nursing homes and with patients with did not need the same amount of care, but he was dementia having a manifest care need and their determined and knew what he wanted, something spouses living together at home. Data had also been that eventually came into conflict with the caregiver’s gathered through conversations with patients with view. Both men have had many contacts with dementia having a manifest care need and living at caregivers every day and even at nights. Anna, who home alone. All interviews and conversations con- had been diagnosed with dementia, was visited by tained detailed and different experiences of when caregivers several times a day and visited a day-care they suffered from care, descriptions which then centre several times a week. She received assistance were used in this analysis. In these interviews and with hygiene, meals, laundry, and cleaning in the conversations, the focus had been on the partici- home. George, also diagnosed with dementia, had pants’ expressions and narratives of lived experi- no ongoing care contacts, as he felt no need for ences from their everyday life. Experiences described them. Instead, it was his wife, Astrid, who was from people with different diseases, as well as from responsible for his care, a care which primarily was shifting contexts, formed a richness of variation in about being near George and answering his repea- the data material. ted questions. The term ‘‘caregiver’’ is used as a Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 3 (page number not for citation purpose) R. Svanstro ¨m et al. collective name for level-two nurses, auxiliary arrive, or even if someone would come to visit. The nurses, registered nurses, and social workers in this sense of not knowing seemed to make the patient study. passive; there was nothing to wait for or prepare for. This was evident in Anna’s story. She did get a strong sense of loneliness when she did not Findings know if anyone was coming. In the conversation The findings reveal that persons who were cared for with the interviewer, it became obvious that home- in nursing homes and home-care services sometimes care services did not intervene and leave a lasting were exposed to unnecessary suffering. The suffer- impression in her lifeworld. ing could be caused by various caring actions, that is, unnecessary suffering. The suffering caused by care Anna: I am alone. (Interviewer: But when you’re that arose seemed to be related to caregivers’ in- in this loneliness, don’t you think that someone ability to be present, to show their face, and to truly will come to me in a few hours, someone I can talk encounter the patient. Suffering from care increased to for a while, and tomorrow I will go to the day the elderly patients’ feelings of insecurity, loneliness, care centre, (No) and meet people there?) No, and alienation; this seemed to be the foundation for I ... live in the present. Unfortunately perhaps, patients’ experiences of being outside of a human but I do. (Interviewer: How far does your present community. There was a lack of knowledge and moment reach?) My present moment is today, and understanding about the patients’ lifeworld. The what happened yesterday maybe, I won’t remem- findings are further described in this article in these ber everything. No, you know, my memory is four themes: an absence of the other in care, an gone. absence of dialogues, a sense of alienation, and a sense of insecurity. When the caregiver only carried out the task without the needs of the person with dementia in focus, there was an obvious risk that the care did not leave any An absence of the other in care sustainable traces in the patient’s world, and a feeling of loneliness became obvious. This feeling tended The encounter between the caregiver and the patient to contribute to a passive life. For the person with seems to bring an indication of care where the dementia who lives alone, the possibility of good caregiver sometimes becomes absent for the patient. meetings often seemed to occur at the day care centre, There was an uncertainty for the patients in the where the patient was in a context that gave meaning. nursing home and sometimes a fear of future meet- This context also was at hand in the person’s home ings in that the patients did not know what to expect but did not seem to be used by the caregivers. in the next meeting. Fixed times for meetings were The couple living at home strived on without any not plentiful, and the patient was provided with little meetings or help from the home-care service. The knowledge about care schedules, yet someone came situation was worsening slowly, and Astrid felt like and helped with various activities of daily living she no longer could leave her husband, not even for a (ADL) tasks. The patients did not know which short while, as, for example, to go to the hairdresser. caregiver would enter the room, which made them In this situation, no one from the home-care service wonder if the caregiver would treat them as a person had visited the couple or tried to find out about the or simply as someone who needs care. That is, will it couple’s situation. No one but the couple’s daughter be a caregiver who is not open to human contact - realized how tired Astrid was, a circumstance that a caregiver who only cares about the task that is made Astrid call and ask for relief. Even after their pre-formulated and about to be performed? Stig talked about how young female caregivers difficult situation was discovered, nobody from the were more occupied with themselves and their own home-care service went to their home for a visit. The appearance rather than taking care of him. This couple did stand alone, with no one investigating if raised profound existential questions about himself, there was any continued need for care. Astrid did not and he did get a feeling of disgust as he lied with the know her rights when she was talking to the exuding wound on his stump. He thought that this interviewer, and he asked what she thought about was the reason why caregivers did not see him and the meeting with the home-care service. did not want to make contact or initiate dialogue Astrid: I have only good things to say. I have noth- with him. As he put it, ‘‘Yes, you don’t really exist; ing to complain about. They will help us ... sigh you become more like a ghost.’’ ... During Whitsun week, I needed to go and For the person with dementia who lived alone, the situation was different. The patient did not know perm my hair and I called and asked if they could when the caregiver, that is, the other one, would come and be here with him while I was away. 4 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care But then, I got him into short-term care and then there was a great and acute risk of him ending up in I could do it. The home care service has never an institution such as a nursing home. Meanwhile, been here, but they would have come. So, I cannot Astrid expressed her situation as follows: ‘‘I’ll try as complain about them. long as I can.’’ The home-care service became aware of the Her husband went to short-term care, but Astrid couple’s difficult situation after Astrid’s cry for could not hand over the responsibility so she visited help. It is common knowledge that with dementia, him. Since he wanted to come home, she brought situations such as this one rarely improve. None- him home again after only 2 days. It appears from theless, the home-care service seemed to neglect this Astrid’s statement that she found it difficult to make problem, had acted as if there was no problem, and demands on the home-care services. It also appeared had not visited the couple. There seemed to be no that there were no meetings to create a dialogue sense of responsibility from the home-care service’s through which needs could be expressed. The data point of view to establish a dialogue with the couple. suggest that there was no ongoing relationship In this case, the responsibility seemed to fall entirely between the couple and the home-care services. on the couple, and especially on Astrid. This means that there were no clear structures in For Anna, who lived alone, there seemed to be no the care, and that it was up to the patient or a spouse satisfactory dialogue either. What characterized car- to assert his or her rights. It seemed to be the ing seemed to be the fast care meetings, where the discretion of the caregivers that determined the caregivers always were on the run to the next patient approach to and the content of care. This gives a or where the caregivers chose to focus on their own picture of a passive home-care organization that did problems, rather than an encounter that could turn not really recognize basic human needs. into a dialogue about the patient’s life situation. Often what was in focus was providing the patient with medicine or food, or quickly tidying the An absence of dialogues apartment. The patient would then be without the Arnold: Well, they do not listen to what I say and important human contact when common tasks were then I do not listen to them either, that is the way performed. it is. Some people you may connect with every Performing tasks together in a dialogue can time you meet them and with others less so. Yes, anchor the patient in a context, in the everyday and with some people you may never connect world. Instead, loneliness became amplified in the with. (Interviewer: But what does this connection contact with the caregiver. There were strong emo- mean to you, when you really feel connected, tions that took over and dominated the patient’s life, when the caregiver really listens to you Arnold?) something that was evident in Anna’s story. Care- Well, but this connection really means a lot to me. givers served her food and then proceeded with their It is worth a great deal. other tasks; as a result, Anna occasionally did not eat. In the conversation with the interviewer, she This conversation took place between Arnold and suddenly became aware of her own plight. the interviewer when they talked about his experi- ences of encounters with the caregivers; it was Anna: No, they are in such a hurry. (Interviewer: experienced as difficult to make contact with the The intention is that they give you food (yes, yes) caregivers. He terms those who he felt were difficult and that you should eat it. But, here it is like you to connect with as ‘‘unjust’’. It seemed that the day just you get food placed in front of you, and you itself decided the form of the meeting, including the don’t eat it.) Well gee, yeah, as long as they are present mood of the caregiver. Both Stig’s and present here .... I eat, of course. Yes. But sitting Arnold’s stories suggest an absence of an ongoing there alone, you know, day in and day out, there is dialogue. It was rather that the dialogue occurred in something terrible. I’ve never been alone all my the moment, when the caregiver was open to a life, as I say. And now. No, I don’t want not be a positive meeting; or, as Arnold described the situa- part of it anymore. Now it is enough. (Interviewer: tion, ‘‘They joke with me to make me happy. They What do you mean when you tell me that?) Yeah listen to me and make jokes with me and then you .... my life can end now. It is enough now. feel as you really are a human being.’’ All of George’s healthcare needs exhausted Astrid. The consequences of an absent dialogue become She frequently struggled with responding to George’s obvious: the patient’s basic care need does not repeated questions. Sometimes, she did get irritated become fulfilled. When caregivers are in a hurry, and lost her patience with him, but repented shortly the patient’s sublime voice may become only a thereafter. She stood alone in her care work, and whisper that no one listens to. Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 5 (page number not for citation purpose) R. Svanstro ¨m et al. This shows the value of the caregiver in seeing and and dealt with different tasks. The caregiver may be acknowledging the patient; this creates the condi- in a hurry and will not invite the patient to tions for a dialogue. Stig, who lived in a nursing participate in the tasks. Caregivers said that they home, said the following. had much to do, and it was difficult to make any demands on them about the content of the visits. Stig: Yes it is, yes it is the connection, the con- Here, feelings of loneliness became as obvious for nection through the eyes. It is in the manner they the patient living at home as for the patient in a offer themselves, they are sympathetic above all, nursing home. Anna talked about the brief meetings they want to try to understand me, that says it all with the caregivers and that she did not feel involved really. in what happened in the home. The caregiver was a welcome companion, but the lack of conversation Human dialogue includes both speech and inter- about the patient’s lifeworld created strong feelings subjectivity where both interlocutors see the other’s of loneliness and alienation. When Anna talked face. When a person’s face was visible, it showed his about her life and youth, her feelings of loneliness or her interlocutor who he or she is, and in the other were reduced, but when the pace of the caregivers one’s face, the person can see who his or her was fast and expressed a heavy workload, this often interlocutor is. This contributes to a type of con- did not leave any room for her stories. firmation and thus a sense of human identity. Both a person with dementia with a manifest care need who Anna: But they are in such a hurry when they lives alone and a couple where one person has come. They will never sit down like this and talk to dementia with a manifest care need have difficulties me; instead, they are running in and out and ... with their identity. This also applies to people who and vacuuming and cleaning and .... They are not have moved to nursing homes. When they move real company and I like, I like to converse. You from their home, they are outside of their usual know? (Interviewer: Yes, yes, I know that. [Anna context. There will be new procedures and new laughs]. But what is it like for you, when they do environments, which can create feelings of insecur- not stay?) Well yes, I know, but they have so much ity, loneliness, and alienation. Because of this, the to do, they cannot stay and converse with me. occurrence of intersubjectivity between caregivers I know this; they have so much to do, so I do not and patients was of great importance for these demand it ... but I miss it. patients. The couple also has had a hard time; they easily became isolated in their home, making them feel A sense of alienation alienated. The planning of the care for the couple was non-existent, and the home-care services were Being an active member of society becomes difficult not only for persons with dementia with a manifest not present; no one from the home-care service had care need but also for their partners. Sustaining life been able to help the couple. They did not get any itself may become more than enough. For those who support and were left in solitude, and when the care lived in nursing homes, there were also limited was absent, their loneliness and vulnerability were possibilities for an active life in society. Disability obvious, despite them being two persons who were limited the possibility to be in one’s known contexts, together. and the caring approach may also contribute to a (Interviewer: What’s most negative about the dis- sense of alienation. The feeling of being outside of a ease?) Astrid: sigh ... Well yes, it is that you become human communion became strong when the care in lonely. (Interviewer: What do you mean, lonely?) a nursing home seemed to be, above all, about tasks Yes, for example, I have to give up attending my to be completed. In Stig’s story, this was obvious needlecraft club meetings, and ... now for example when he shared examples of how caregivers came to when bingo starts, if he doesn’t want to go, then his room to perform some tasks without addressing I have to stay home. That’s the way it is. him, consequently not acknowledging him as a person. Stig would like to talk to his caregivers, but this did not occur often. The feeling of being alone became powerful even though he met caregivers A sense of insecurity frequently. In his words, ‘‘Well, you feel lonely, very lonely, well I say, you really do.’’ The stories reveal insecurity among the patients. The person with dementia with a manifest care Stig, for example, had no opportunity to choose the need who lives alone was in a similar situation. The outcomes of his encounters. One day, there was a visits from the home-care services were often short caregiver who sees and confirms him, and the next 6 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care time there was another who did not give him any Discussion confirmation at all; he became a nobody. Arnold told The findings in this study reveal that persons who are similar stories: At one time when he had to go to the cared for in a nursing home and persons with bathroom in the night, he was denied this. By being dementia with a manifest care need being cared for stubborn and getting angry, he did get help in the at home sometimes were exposed to an unnecessary end. suffering, a suffering caused by care. This increased the patients’ experiences of insecurity, loneliness, and Arnold: Then I thought: ‘Now you have to speak alienation, and this can be understood as experiences up’. (Interviewer: How did it go?) Well it worked of feelings of standing outside of a human community. out in a good way in the end, but it’s hard not The basis of the experiences was encounters without being listened to. (Interviewer: Yes, but what did someone to talk to. The patients in this study ex- you do to get help?) I told them off, and then I got perienced not being secure about when, or if, the help, but it was sad that they did not listen to me caregiver would open an avenue for communion. In at once. fact, no one can know truly when this could happen, but for these actual patients, the unclear and insecure In Anna’s case, there were similar experiences of an situation became more serious because of their unsecure everyday life. She was not given support in vulnerability and their dependence on help from performing the everyday chores and in actively using caregivers. Suffering from care like for these patients her home. Her life became passive with feelings of has been described elsewhere, as, for example, in loneliness and insecurity. One way to escape from hospital contexts (Berglund, Westin, Svanstro ¨ m, & all of this was by going to bed and sleeping. This Johansson Sundler, 2012). Unnecessarily suffering inactive life affected her health negatively. In the case from care seems to appear in different caring situa- of George and Astrid, there was a similar problem. tions, and not solely in nursing homes or in home-care Their existence was fragile. If something happened services. to Astrid’s health, this would mean that George If there is a culture of care that does not allow the would not cope at home on his own. This created caregiver to confirm the patient in every single care an unsafe situation for both Astrid and George. He action, there may be a lack of a holistic view on the would probably end up in an institution very quickly care and at the same time a lack of respect for human if Astrid’s care should be discontinued. The dialogue dignity. Kase ´n, Nordman, Lindholm, and Eriksson with the home-care services did not exist, and any (2008) argued that a rigid care organization with caregiving that would support the couple and create an unreflective attitude of the caregiver in his or her basic security in their everyday life was absent. This encounters with the patient can create suffering left the spouse with overwhelming feelings of grief caused by care. The basis for this lack of caring over a responsibility that she knew she could not was the caregiver’s view of humanity in which the keep. patient sometimes became an object. To be seen as an object, without being involved in a dialogue, may (Interviewer: What do you know about the future create a feeling of being alone and isolated in which with this disease and life with this disease?) Astrid: the patient does not get invited into a human Well, the only thing I know is that I will go on like community. The findings in this study showed that this as long as I can manage. Then, and then there everyday life became insecure for the participants, is nothing to choose about: he has to move to a disempowering them, which made their everyday care institution. (Interviewer: You mean that he has to move somewhere else then?) Well, first of life become passive. Life was occupied with feelings all, he may have to move into the short-term care. of loneliness, a lack of identity, and a sense of So they have told me, I only have to call them. alienation, created by the absence of confirmatory care. This weakened the patients’ and even their But, as long as I can manage I will try. (Inter- partners’ identities and raised questions about if viewer: For how long will you manage?) Well, I do and how the care can change the culture into a not know. (Interviewer: What are your feelings on facilitating organization that enables the patient to a day like this?) sigh ... Well, today I feel pretty good, but sometimes it’s hopeless. (Interviewer: feel secure and truly at home in their home. In this For how long have you had these feeling of study, patients experienced a sense of alienation hopelessness?) sigh, Well, maybe for about six when feeling lonely and not connected with or months. (Interviewer: What is it like for you to live confirmed by the caregiver. When the other’s face with this kind of despair, for such a long time?) is absent in the caring encounter, the patient Well, there is no quality of life, it’s not ... [Astrid may not feel confirmed as a human being. This shortly thereafter burst into tears]. can give a non-existent, intersubjective dialogue. Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 7 (page number not for citation purpose) R. Svanstro ¨m et al. Similar to the findings in this study, Dahlberg confirmation; it was found to be unpredictable. The (2007) describes involuntary loneliness as a feeling confirmation may occur in the next encounter with of standing alone and outside of connectedness to the caregiver, but it could be absent as well. Patients others. When connecting with others, this loneliness may not know when the caregiver will appear, or if can disappear. the caregiver will invite them into an intersubjective A way to confirm others is by showing the face dialogue. The caregivers can be somewhere near when meeting other persons (e.g., to be truly without truly paying attention to and acknowledging present). This was highlighted by Le ´vinas (2005/ the patient. This means that the patient may still be 1961), who meant that the face gives us the feeling lonely, even if the caregiver is present. recognition of the other, whose otherness then will Dahlberg (2007) describes how one can feel lonely, appear. The recognition of the other’s otherness will even if there are other people around. Being appear in the moment. This was not instant and involuntarily lonely and not belonging to anyone needs constant replenishment to be kept alive, or as are ways of ‘‘not being’’. This can be compared to Le ´vinas (2005/1961) put it, ‘‘The I is not a being feelings of standing outside the human community, that always remains the same, but is the being whose as found in this study. existing consists in identifying itself, in recovering its The caring relationship is important to avoid identity throughout all that happens to it’’ (p. 36). unnecessary suffering. Human contact and feeling To have an identity means to be at home with oneself connected with the caregiver are important. In this study, suffering was experienced when the caregiver and to be an ‘‘I can.’’ The patient’s own identity is an important part of was absent in the care of the patient. A study by caring for patients with dementia. To have an Custers, Westerhof, Kuin, and Riksen-Waraven identity is, according to Kitwood (1997), to know (2010) showed that residents in nursing homes who one is; it involves maintaining a sense of needed fulfilment in caring relationships and that continuity with the past and some kind of consis- the caring relationships contributed to the residents’ tency across the course of one’s present life. Attach- well-being. Such caring relationships were built ment is another aspect of importance in care. The upon dialogue between the patient and the caregiver. loss of primary attachment can undermine one’s Caring relationships also have been identified as sense of security. These aspects must therefore be important in the care of patients suffering from suggested as important in the care of people suffer- dementia. A study by Rundqvist and Severinsson ing from dementia and probably also in the care of (1999) showed three factors that are important for a patients in nursing homes. Brown and Shlosberg caring relationship: touch, mutual confirmation, and (2006) have concluded that the occurrence of the caregiver’s values in the caring culture. The way attachment behaviours among people with dementia that caregivers communicate in the encounter may who live at home with a caregiver is not well therefore be essential to avoid unnecessary suffering. understood, which is an important area for further Building a dialogue based on encounters between research. The patients in this study had difficulties the patients and the caregivers is probably essential with presenting their needs, especially when it came to avoiding experiences of insecurity, loneliness, and to expressing their desires. Their sublime wish, alienation, but these mutual encounters built upon about the possibility to encounter the caregiver to dialogue seemed to be rare in this study. The lack of feel confirmed and know that you are an accounted mutuality will probably obstruct the confirmation of human being, was an unfulfilled desire. This left a the patient as an individual, which may be required broken identification process where the person to maintain a human identity. The care organization seemed to have difficulties in grasping his or her and the caregiver did not give the patient enough identity and personhood. space and time that were needed to be a human According to Le ´vinas (2005/1961), our original among humans, that is, a sense of belonging in a identity is the basis for our existence. The finding in human community (Bengtsson, 1998). All of this led this study points to a culture of efficiency and to inadequate care. Malmedal, Ingebrigtsen, and rationality in the care that seems to focus more on Saveman (2009) showed in a Norwegian study of 16 specific tasks and that the care was performed in a nursing homes a high extent of different types of pragmatic way. This may minimizes opportunities inadequate care. The high extent confirmed that the for the caregiver to truly encounter the patient and result was not isolated uncaring acts, but rather was to meet their sublime wish, which could give the a common part of life in these nursing homes. possibility for the patient to feel valued as a human Although the most common uncaring acts were of being and to be someone, an ‘‘I can.’’ During the an emotional and negligent character, such as talking encounter with the caregiver, the patient cannot disrespectfully or ignoring the patients, in some ways choose whether or when the encounter will lead to the patients were exposed to unnecessary suffering. 8 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose) Suffering caused by care Andersson, I., Pettersson, E., & Sidenwall, B. (2007). 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Scandina- nursing homes: A hermeneutic study about residents’ vian Journal of Caring Science, 17, 239249. experiences. Journal of Advanced Nursing, 60, 172180. 10 Citation: Int J Qualitative Stud Health Well-being 2013; 8: 20603 - http://dx.doi.org/10.3402/qhw.v8i0.20603 (page number not for citation purpose)

Journal

International Journal of Qualitative Studies on Health and Well-BeingTaylor & Francis

Published: Jan 1, 2013

Keywords: Elderly; care; dementia; lifeworld; patient experiences; suffering

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