EMPIRICAL STUDIES

doi: 10.1111/j.1471-6712.2011.00965.x

Variations in older persons descriptions of the burden of loneliness

Solveig Hauge PhD, RN (Associate Professor)1,2 and Marit Kirkevold EdD, RN (Professor)1,3
1

Department of Nursing Sciences, Institute of Health and Society, University of Oslo, Oslo, Norway, 2Faculty of Health and Social Science, Institute of Health Sciences, Telemark University College, Porsgrunn, Norway and 3Department of Nursing Science, Institute of Public Health, University of Aarhus, Aarhus, Denmark

Scand J Caring Sci; 2012; 26; 553560 Variations in older persons descriptions of the burden of loneliness Research indicates that approximately one-third of older people over the age of 65 years report loneliness, with even higher rates among those aged over 85. Loneliness is associated with a variety of health issues, such as depression, anxiety, physical impairment and social isolation. The purpose of this paper is to describe the characteristics of the burden of loneliness, and investigate the variability in how it is described by older. In-depth interviews were conducted with 12 older people in autumn 2006 and spring 2007 in Norway. Participants aged from 70 to 97 years were recruited from a variety of backgrounds, and varied in health status and social status. The ndings reported in this paper are based on hermeneutic analyses of the interviews.

Our ndings indicate that some of the participants experienced loneliness that they felt able to manage. They experienced a uctuating loneliness that was linked to feeling valuable and having power and energy. However, another group described experiences of agonising loneliness. They felt a present and extensive loneliness, together with feeling less valuable and lacking in power and initiative. They seemed trapped in their loneliness, and unable to overcome their situation themselves. Our ndings indicate that the burden of loneliness is experienced differently. For some older persons, the experience of loneliness is so severe that they urgently need help to manage their situation. Keywords: older people, loneliness, qualitative study, hermeneutic. Submitted 25 July 2011, Accepted 4 December 2011

Introduction
Survey data indicate that approximately one-third of people over the age of 65 years report that they feel lonely often or sometimes (15). For older people aged over 80, the gures are even higher (36). Older people are particularly vulnerable to loneliness because they are exposed to poor health that restricts social activities and living alone. Research indicates that poor physical and mental health correlates with loneliness (710). There seems to be a particularly strong relation between loneliness and depression; loneliness is seen as a predictor of depression (8, 9, 11). Research also suggests that loneliness correlates with poor socio-economic status (12) and that older people, due to different losses, spend more time alone and thus are more vulnerable to loneliness (4, 13).

Correspondence to: Solveig Hauge, Department of Nursing Sciences, Institute of Health and Society, PO Box 1130, NO-0318 Blindern, Norway. E-mail: solveig.hauge@medisin.uio.no

Feelings of loneliness have recently been outlined in various qualitative studies (1420). These studies indicate that older people adapt or readjust to life alone (18, 20) and that they use a variety of coping strategies to ght loneliness (1719). Furthermore, loneliness is described as a state one can experience alone, or in social situations (16, 20). Recent literature suggests that there are broadly two experiences of loneliness. Some studies describe the state of loneliness in solely negative terms, such as isolated, and being deprived and neglected (15), or as anxiety, fear, sadness and a state of silent suffering (17). Other studies indicate that loneliness can have both negative and positive connotations. For instance, Dahlberg (16) describes loneliness not only as strange, wrong, ugly and shameful but also as restful and creative; and Graneheim and Lundman (14) describe loneliness both as feeling abandoned and as feeling free. One might wonder if these ambivalent descriptions of loneliness have something to do with variations in the perceived burden of loneliness. A similar question arose from the ndings of a study we conducted into older peoples understanding of loneliness (21). In the original study, we recruited thirty older people who were willing

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Table 1 Demographics of the 12 included participants

to share their thoughts on loneliness. During the interviews and in the subsequent analysis, it became clear that some of the participants talked about loneliness merely in theoretical terms, in that they did not feel lonely themselves. By contrast, the participants who talked about loneliness as a personal experience described a nuanced and, at times, demanding experience of loneliness. They described a variety of coping strategies but also emphasized that it was easy to say, but not easy to do something when feeling lonely. In both the descriptions of the loneliness experience and the descriptions of coping strategies, it became obvious that the experience of loneliness differed markedly among the participants. The burden of loneliness seemed to differ in important ways, but we did not explore this observation in detail in our initial report. The aim of this paper, therefore, is to investigate further how older people experience and deal with loneliness. To develop a deeper understanding of the loneliness experience we will address the following questions: What characterizes variations in the experience of loneliness? What are the differences and similarities in the ways participants cope with loneliness?

Gender Female Female Female Female Female Female Female Female Female Female Male Male

Age 96 84 82 80 90 85 95 91 78 84 95 70

Social status Widow Widow Widow Widow Widow Widow Widow Unmarried Widow Widow Widower Divorced

Living situation Nursing home Nursing home Private home Independent living unit Independent living unit Private home Private home Private home Private home Private home Independent living unit Private home

To meet the aim of this paper we have selected 12 of the 30 interviews for further analysis. The selected interviews are with the participants who talked about their personal experiences of loneliness. A detailed presentation of the 12 participants gender, age, social status and living conditions is outlined in Table 1.

Methods
In order to gain a deeper understanding of how older people experience loneliness, a qualitative interview study was conducted within a hermeneutic interpretive tradition (2224). A hermeneutic design uses pre-understanding, interpretation and dialogue both with the participants and later on with the text. The researchers pre-understanding of loneliness is described in the introduction to this paper. Particularly, we interpreted loneliness as an individual and painful personal feeling which might be demanding to handle for the person in question.

Data collection
Data were collected using individual in-depth interviews. An interview guide comprising the main themes guided the interviews. The interviewer invited the participants to talk about how they dened loneliness, how they experienced it, how they coped with loneliness and how best to support a lonely person. Interviews were conducted as dialogues using openended questions that allowed the participants to reect on and express their thoughts and understandings in their own words. During each interview, the interviewer (rst author) summarized the participants dialogue several times to ensure that she had interpreted the participant accurately. Interviews were conducted either in the participants own home, in their private room at the nursing home, or in an ofce at the day-care centre.

Participants
Thirty older people (21 women and 9 men) participated in the original study. Inclusion criteria and the sampling strategy were guided by the principle of maximum variation (25) in terms of age, gender, health status, living conditions and marital status. Eighteen of the participants were recruited through community health services and three through a day-care centre for older people. In order to get in contact with older people who managed their life without support from health authorities, 5 of the 30 participants were recruited by a Red Cross volunteer and four by snow ball sampling. In the case of snowball sampling, colleagues and friends were asked if they knew older persons who might be willing to share their thoughts on loneliness. We also asked participating older persons if they knew of another older person who might be willing to participate.

Data analysis
All interviews were transcribed verbatim. Analysis was inspired by the levels of qualitative hermeneutic analysis described by Kvale (22) and Fleming et al. (23). First, all interviews were listened to several times, followed by a rst reading of the transcript to gain an overall impression of participants understandings and experiences. Through this process, we became aware that participants experienced loneliness differently. In the second step, we examined the transcripts in more detail to identify themes that captured participants descriptions of their feelings of

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Older persons descriptions of the burden of loneliness

Table 2 Overview of main themes and subthemes

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Variations in the burden of loneliness Manageable loneliness Fluctuating and ambiguous loneliness Feeling valuable Experience of power and initiative Agonizing loneliness Present and extensive loneliness Not feeling valuable Feeling powerless and lacking initiative

I often feel lonely, particularly if all my family are gone, then it feels awful (Female, 90). Second, the feeling of loneliness appeared ambiguous. Participants would sometimes feel they were not really lonely. However, this observation arose from comparing their personal situation, in which they felt lonely, with the fact that people important to them were still available. It is hard to explain what it [loneliness] is. You kind of feel alone, and you kind of feel down. But on the other hand, you cant say you are lonely because I have a daughter and grandchildren and a sister, with whom I have good contact (Female, 82). Feeling valuable. The feeling of loneliness appeared closely related to participants relationships with those closest to them. It appeared crucial that the relationship contained feelings of being valuable, or the opposite. Feeling valuable could be related to how family members showed thoughtfulness or interest in the old persons daily living situation. Several participants talked about having regular contact with children or grandchildren once a week or even once a day. They strongly appreciated their family making so much effort to keep in touch: If a day passed by and none of my closest called me, that would have been terrible (Female, 85). Some participants seemed to be naturally self-condent, and did not interpret a lack of contact as being less valuable. If one of their closest friends or relatives did not make contact as usual, they interpreted it as being related to their heavy workload or other events outside the relationship between the participant and his/her family. It appeared that, instead of always waiting for others to make contact, they felt entitled to make contact with family or friends whenever they wished: If I am sitting here and nobody shows up, I pity myself very much. But then I call someone (Female, 95). Experience of power and initiative. The descriptive quotation above also underlines another strong aspect of manageable loneliness described by participants. They appeared to have the power and initiative to cope with their loneliness. They did not just pity themselves, or sit passively waiting for others to intervene. What they actually did about their situation reected their personal interests and their capacity to act: Yes, the time moves slowly, but thank God I have my telephone. But unfortunately many of my friends who I used to call are gone now. But then I have my TV; it actually saves me. That is very good and very nice (Female, 80). Telephone and television seemed to be very common and important devices for handling loneliness, and each participant used personal strategies to help them. Some preferred listening to the radio or reading books or newspapers. Others were more physically oriented in their

loneliness and their strategies for dealing with loneliness. Themes identied through this process were; uctuating loneliness; and present loneliness. The third step was a rereading of each interview to obtain a new understanding. In this process, we developed an understanding of loneliness as manageable vs. loneliness as agonizing. The fourth step involved making an overall interpretation of the marked difference between participants who managed their loneliness and participants who felt trapped in their loneliness and unable to cope.

Ethical considerations
The Research Committee for Medical Research Ethics for Eastern Norway and the Norwegian Social Science Data Services assessed and approved the study. The research process emphasized the principles of informed consent, protection from harm, anonymity and appropriate data storage (26). All participants received written information and signed an informed consent form before being included in the study.

Findings
The participants in this study described their thoughts and experiences of loneliness in different ways. The main themes and subthemes are outlined in Table 2.

Manageable loneliness
Some participants described experiencing a loneliness that was painful yet manageable. Analysis revealed three main descriptions of why some participants experienced loneliness as endurable. Fluctuating and ambiguous loneliness. First, the loneliness that participants described seemed to uctuate; it was sometimes part of their lives and sometimes not. This uctuation seemed strongly inuenced by the way those closest to them behaved. If their family were close or available, the loneliness seemed less apparent. However, if important family members were not available, the loneliness became more apparent:

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S. Hauge, M. Kirkevold discuss, and they nd these subjects strange and impossible to understand. They can be invited to join in and even try to participate, but they still feel outside or disconnected from the others: I think that you feel you are not able to keep up with what is going on or keep up in a conversation. That makes you feel lonely even if you are together with others (Female, 78). Further, participants described the fear of causing trouble for their families and others: You are old, and you just think you are a bother. Yes, you are a bother. We have to look after mother, oh, mother needs this or that. They do not do it out of ill will, but they have thousands of other things to do. My children have children and grandchildren, who will always take precedence (Female, 96). The fact that her retired children spent most of their time on leisure and then prioritized their grandchildren strongly supported her sense of being bothersome and less important to her family. Another experience that seems to undergird the feeling of not being valuable seems to be connected to a feeling of having nothing to bring to the conversation or to the relationship: But you are reluctant [to participate in the conversation] since you have so little to participate with and because you dont want to make your closest ones feel any discomfort (Male, 95). Finally, it appears that the feeling of loneliness itself inuenced these participants experiences: As a lonely person, you feel kind of second-class, and that makes you feel you have to withdraw (Male, 95). Feeling lonely was not an experience for normal people, only for the second-class ones. Feeling powerless and lacking initiative. A striking and common theme among participants experiencing agonizing loneliness was the accompanying feelings of lacking power and initiative. The participants told stories about lacking both physical and mental strength. This lack of strength made many things difcult for them, including practical, everyday things as well as participating in social relationships: I nd it very hard at my age; you have no energy. I have a pair of socks or something like that which I want to wash. Then I know I will spend all day trying to do it, but then they are still lying there day after day (Female, 96). This feeling of diminished energy makes even the smallest tasks, such as washing a pair of socks, seem too difcult. It may not be the action itself that is difcult. Rather, the person lacks the spirit or initiative and therefore keeps putting off the activity until another time. It is also interesting that this lack of energy is explained by advanced age. They appear to believe this energy loss is part of the ageing process.

activities, which included walking and visiting public places. Quite a few actually mentioned doing housework or gardening as pleasant activities. The main point is that they had power and initiative to do something about the loneliness feeling when it appeared.

Agonizing loneliness
Some of the participants experienced a deep and devastating loneliness. They described their loneliness experience in detail and as encompassing a variety of nuances. Present and extensive loneliness. The participants who experienced loneliness as agonizing described a present and extensive feeling of loneliness. They talked about their loneliness using such expressions as I do feel lonely and isolated or the loneliness is so extensive. The participants who experienced this severe loneliness seemed to nd it overwhelmingly present in their lives. One used the metaphor wall of loneliness to describe his loneliness. His descriptions gave an understanding of being enclosed in loneliness, in a room separated from other people, which was hard to get out of, or as he put it: The problem is to break the wall of loneliness (Male, 95). Not feeling valuable. A feeling of not being valuable also distinguished the participants who experienced agonizing loneliness. The expressions of feeling undervalued were many and nuanced. For instance, they experienced events as moving too fast for them to cope, or to understand what was going on. It seemed like the world was constantly changing, which gave them a feeling of being outdated, as described by a 95-year-old man residing in an independent living unit: Yes, you feel kind of outdated, and you feel frail. Everything moves so fast nowadays (Male, 95). Another characteristic of this experience was that it was not necessarily alleviated by close relationships. Rather, the opposite was true; this feeling of being outdated could actually be reinforced in social relationships with others, such as with children or grandchildren. Therefore, in some cases, spending time with those closest to them actually made these participants feel even more outdated, as described by this 96-year-old woman living in a nursing home: But you dont know what is going on. Yesterday I spent time with my children and grandchildren, and they talked all the time about things that I wasnt able to understand. It is impossible to keep up (Female, 96). This quote shows that close social relationships can actually function as a strong reminder of older peoples lack of knowledge about what is going on. They are not able to keep up with the subjects the younger generation likes to

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Older persons descriptions of the burden of loneliness Another nuance of this theme was lack of initiative. This lack of initiative placed them into a waiting situation where they appeared solely dependent on other people to do something about their situation: You lose your initiative and your energy. You wait for others to do something (Female, 78). The combined lack of initiative and lack of strength appeared to make participants completely dependent on others in coping with their loneliness. Doing things by oneself seemed impossible.

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Discussion
Findings in this study indicate that the burden of loneliness varies extensively among older persons. First, the participants who described a manageable loneliness seemed able to manage their loneliness by themselves. The ability of older persons to cope with loneliness is conrmed in other studies (17, 19, 27). Pettigrew and Roberts descriptions of two main coping strategies, social interaction (e.g., making a call or going out) and solitary activities (e.g., reading, TV and housework), seem to t well with those of the participants in our study. However, it is not easy to explain why some older people are able to cope with loneliness while others are not. Based on the ndings in this study, one might question whether the ability to cope is related to the experience of loneliness as a uctuating feeling, and to feeling self-condent and valued by others. There is support in the literature that a chronic feeling of loneliness is devastating (3, 4, 28) and that self-condence is protective to loneliness (9, 14). Second, a striking nding in our study is how some older people can experience loneliness as agonizing. This devastating feeling of loneliness has been reported in earlier research. Heravi-Karimooi et al.s (15) study in an Iranian context, McInnis and Whites (17) study in an Australian context and Dahlberg (16) and Graneheim and Lundmans (14) studies in a Swedish context all report loneliness to be painful and demanding. Participants lack of energy and initiative is not easy to understand or explain from either an empirical or a theoretical point of view. It may be related to reduced physical and mental power in old age, but that was also the case for the participants who managed their loneliness. There are some indications that the participants who experienced agonizing loneliness may have actually been depressed. There is evidence to support a close relationship between loneliness and depression (9, 29). However, there are also indications that one can be lonely without being depressed and vice versa, i.e. depressed without being lonely (29). Our study did not collect data about depression, therefore we do not know if our participants were lonely, depressed, or both. However, they identied their feelings as loneliness. There are reasons to believe that the feeling of agonizing loneliness might be related to the relationship between the

older person and his/her family. Strong and positive family relations has been found to reduce the feeling of loneliness (16, 30). In light of this, it is interesting that some of our most lonely participants experienced that their young family members seems unable to understand their situation, for instance by not bringing up topics in the conversation which were interesting also for them. The conversation thereby developed to exclude the older person from important family relations. In addition, the old persons themselves seemed reluctant to express that they were lonely in fear of being a bother to their family. Based on our ndings we therefore would question if the feeling of having less value described by our participants might colour the relationship and reduce the lonely persons ability to keep up or re-establish important family relations. Our descriptions of agonizing loneliness as a combination of feeling less valuable to others, lacking energy and a constantly present feeling of loneliness are, to the best of our knowledge, new to the literature. In the following, we bring some theoretical perspectives to the discussion in the hope of shedding further light on our main nding of variation in the burden of loneliness. Weiss et al.s (31) distinction between the loneliness of social isolation and the loneliness of emotional isolation is an important contribution to understanding the dimensions of loneliness. According to Weiss et al., emotional isolation causes a person to feel utterly alone and empty, as if dead or hollow. We could claim that our descriptions of agonizing loneliness mirror Weiss et al.s description of emotional loneliness. However, in some ways, Weiss et al.s theory stands in opposition to our ndings. The descriptions of restlessness and constant activity to ease the experience of loneliness were not visible in our loneliest participants descriptions. Rather, the opposite seemed to be true, as though they had given up. This raises the question of whether this part of Weiss theory is relevant for older people. As we cannot rule out that some of our participants were depressed, we cannot draw rm conclusions in this matter. However, our ndings call for further research and a need for further theoretical explorations, taking older peoples situation into account. Another relevant theoretical approach is developed by Killeen (32). In an attempt to uncover the differences between a range of loneliness-related concepts, Killeen (32) developed a loneliness continuum ranging from alienation at the negative end of the continuum to connectedness at the positive end. Killeen describes loneliness as a less severe state than alienation. His description of the characteristics of alienation as powerlessness, homelessness and social and self-isolation seem particularly similar to our nding of agonizing loneliness. Describing states of loneliness with different levels of severity by separating alienation from loneliness might indicate that our differentiation between manageable and agonizing loneliness is reasonable.

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S. Hauge, M. Kirkevold are in great need of care. Health professionals need information regarding the nuances, severity and expressions of loneliness. Furthermore, health professionals must assess whether the older person has a severe type of loneliness requiring interventions to support the older persons power and self-condence. Intervention strategies that relieve loneliness are challenging to implement. Systematic reviews of interventions to relieve loneliness reveal limited evidence on the effectiveness of one-on-one contact and group interventions (38, 39). For example, a study exploring a friendship enrichment programme concludes that loneliness was reduced in both the test group and the control group (40). Group interventions that target individual interests of different people, such as writing, art, or exercise groups, seem promising (38, 41). Most importantly, health professionals must learn to examine each persons life situation and understand the importance of individual interests before developing group activities. Because intervention studies do not distinguish between participants with severe and less severe loneliness, it remains unclear whether targeted group interventions help the older people who experience the most agonizing loneliness.

The agonizing loneliness described in this paper might also be considered as an existential plight. The theoretical literature contains discussions of loneliness as mainly a social problem due to unfullled needs versus an existential phenomenon (3336). According to Mijuskovic (37) and Nilsson et al. (35), loneliness has a strong existential dimension and is an inevitable part of the life of every human being. The participants who described agonizing loneliness seemed to describe loneliness both as existential and as lack of social relationship(s). In summary, our ndings of a severe state of loneliness that an older person is unable to cope with, and a less severe state of loneliness with which they can cope, are to some extent supported both empirically and theoretically. However, more research is needed to continue developing theories about loneliness in order to encompass older peoples experiences and challenges and to identify measures that may help lonely older people who need assistance in dealing with the burden of loneliness.

Methodological considerations
In this study, we have sought to strengthen the validity of our ndings throughout the research process. First, we carefully recruited a variety of older people who were willing to share their thoughts about loneliness (25). Second, data were collected in an open dialogue between the participants and the researcher, who invited the participants to express their opinions freely (22, 23). The conversations were audio taped and transcribed verbatim. In hermeneutic studies, the dialogue between the interviewer and the participant and between the researchers and the text is important (22, 23). In this study, rigour was maintained through critical reection, both during the interview process and in dialogue with the text. Examples of critical-reexive questions include the following: Is this interpretation grounded in the text? Does it accord with the overall experience from meeting with the participants? Is it a reasonable interpretation? The researchers discussed possible alternative interpretations and developed the ndings in a continuous dialogue with the text and through a long process beginning with identifying simple themes and moving toward an overall interpretation. A limitation in this study is that all participants were ethnic Norwegian and that the participants never were asked directly if they considered themselves as lonely. However, the fact that twelve of the participants in spite of not being asked directly so openly described their experiences of loneliness might also be considered a strength.

Conclusions
The ndings from this study indicate that the burden of loneliness varies. First, there seems to be a very severe loneliness experience connected to a deep and agonizing feeling of loneliness. This state of loneliness seems to sap all of the lonely persons energy and break down his or her self-condence. This induces a state of loneliness that the person is unable to manage on his or her own. Older people who experience this type of loneliness need support from health professionals or others to cope with their situation. Second, there seems to be a less severe experience of loneliness that does not seem to affect people as profoundly. The loneliness is painful, but it can be managed using ones own strength or with minor support from family members or friends. Although less obviously in need of professional help, health professionals need to be aware of these individuals, and assist if needs of assistance develop.

Acknowledgements
We wish to thank the older people who participated in this study. We also wish to thank the Group for Elderly Care Research (GEOF), Department of Nursing, University of Oslo, for valuable comments and support.

Implications
This study indicates that some older people experience a severe type of loneliness that they feel unable to manage. The older people who experience this agonizing loneliness

Funding
The study was partly funded by the Group for Older people Care Research (GEOF), University of Oslo, Norway.

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Author contribution
Solveig Hauge and Marit Kirkevold designed the study; analysed the data; and prepared the manuscript. Solveig Hauge collected the data.

Norway and the Norwegian Social Science Data Services May/June 2006.

Conict of interest
The authors declared that they have no conict of interest.

Ethical approval
The study was assessed and approved by the Research Committee for Medical Research Ethics for Eastern

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