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International research concerning end-of-life issues emphasizes the importance of health care professionals (HCPs) being prepared to deal with existential aspects, like loneliness, in order to provide adequate care. The last phase of life is often related to losses of different kinds, which might trigger feelings of isolation in general and existential loneliness (EL) in particular. There is a large body of research concerning loneliness among older people in general, but little is known about the phenomenon and concept of EL in old age.
This study aims to describe the framing, design, and first results of the exploratory phase of an intervention study focusing on EL among older people: the LONE study. This stage of the study corresponds to the development phase, according to the Medical Research Council framework for designing complex interventions.
The LONE study contains both theoretical and empirical studies concerning: (1) identifying the evidence base; (2) identifying and developing theory through individual and focus group interviews with frail older people, significant others, and HCPs; and (3) modeling process and outcomes for the intervention. This project involves sensitive issues that must be carefully reviewed. The topic in itself concerns a sensitive matter and the study group is vulnerable, therefore, an ethical consciousness will be applied throughout the project.
The results so far show that EL means being disconnected from life and implies a feeling of being fundamentally separated from others and the world, whether or not one has family, friends, or other close acquaintances. Although significant others highlighted things such as lack of activities, not participating in a social environment, and giving up on life as aspects of EL, the older people themselves highlighted a sense of meaningless waiting, a longing for a deeper connectedness, and restricted freedom as their origins of EL. The views of HCPs on the origin of EL, the place of care, and their own role differed between contexts.
The studies focusing on identifying the evidence base and developing theory are published. These results will now be used to identify potential intervention components, barriers, and enablers for the implementation of an intervention aimed at supporting HCPs in encountering EL among older people.
RR1-10.2196/13607
Research conducted by our group shows that older people receiving municipal care during the last period of life [
International research concerning end-of-life concerns emphasizes the importance of HCPs being prepared to deal with existential issues in order to provide adequate care and services. One such central existential issue is loneliness. Loneliness is often related to either physical aspects of life, where a need for closeness and touch are in focus, or to social isolation, where a need for human relationships are in focus [
It is not possible to deal with aspects of EL without taking a philosophical point of departure. Existentialists such as Frankl [
EL is often described in relation to dying and death and especially concerning palliative care [
HCPs working in palliative care have described how, although they are trained to take care of patients in different crises, they end up experiencing their own unwanted thoughts and feelings about death during that process. This results in a sense of vulnerability, and they thus felt less prepared to handle their patients’ existential suffering [
The next of kin are another group that must be considered when investigating older people’s experiences of EL. Although patients may struggle with existential concerns at the end of life, these issues are seldom brought into focus in their care [
The way in which HCPs encounter patients’ existential issues is clearly related to the context of care. Studies in palliative care have shown that there is a need for research concerning existential issues related to different contexts and cultures of care, as well as the influence of context on the provision of care and service. This knowledge is needed to end patients’ sense of isolation and contribute to more health-promoting care [
There is a lack of any methods for supporting HCPs in identifying and handling EL. Several studies (eg, [
We know that caring for people at the end of life is existentially challenging, as dying and death are constantly present, especially in the care of older people. As all frail older people are by definition in the last phase of life, we can assume that they experience EL to some degree. However, EL is a multifaceted phenomenon that needs to be further explored. On the basis of earlier research, we also know that HCPs need support to encounter older people’s thoughts about life and death. The aims of the LONE study are thus to:
Identify the evidence base for EL, by investigating the aspects and dimensions of EL.
Develop a theoretical frame for an intervention by investigating:
The meaning of EL from the perspective of frail older people and how EL can be eased.
Significant others’ experiences of encountering EL, and how they handle situations when their relatives experience EL.
HCPs’ experiences of encountering older people with EL, the ways in which they identify and handle EL, and their own needs for support.
EL in relation to different care contexts.
Prepare the modeling process and outcomes for the intervention by:
Identifying potential intervention components, as well as barriers and enablers for the implementation of the intervention.
Developing an outline for the intervention.
This paper describes the exploratory phase of a study focusing on EL among older people, which in turn will form a basis for the development of a complex intervention to support HCPs who care for these people. According to the MRC [
According to the MRC [
According to the MRC [
According to the MRC, it is important to develop a theoretical understanding of the likely process of change by “drawing on the existing evidence or theory, supplemented if necessary by new primary research, for example interviews with those targeted by the intervention or involved in its development or delivery” [
We, therefore, conducted empirical studies focusing on EL among older people through interviews with frail older people, their significant others, and HCPs. For an overview of the different parts, see
Overview of the areas included in the developmental phase of the intervention.
In total, 23 patients and residents were interviewed concerning their experiences of EL. The criteria for inclusion were: being aged 75 years or older, being able to communicate, and being frail. Even though frailty has become an established concept in research, there is no agreed upon definition [
We included patients and residents from different contexts: primary care, home care, hospital, special accommodation, and palliative care. In primary care, home care, and special accommodation, the informants were identified by staff. At the hospital, the informants were identified by staff during their stay and invited to participate in connection with their discharge from hospital. In hospices, patients were identified and invited to participate after admission. Due to ethical aspects, people who were obviously in the very final stages of their life and receiving end-of-life care were not included.
The interviews with the patients and residents (n=23) were performed as individual narrative interviews focusing on the experience of EL. A total of 2 interviewers performed the interviews as a pair. The roles of the 2 interviewers were clear before the interview, as one performed the interview while the other sat to one side taking notes, and if needed, picked up clues that were missed during the interview. All interviews were performed by a doctoral student who was supported by a researcher with profound knowledge about interviews with older people and people in palliative care.
The interview started with an introduction to the concepts of loneliness and a deeper sense of loneliness; that is, EL. The informants were then asked for their thoughts about this and whether they could recall any situation when they felt that way. Probing questions were asked concerning the situation, their thoughts and feelings, whether they could or wanted to share their feelings with someone else, and in what way the experience of EL could be eased. At the end of the interview, the patients and residents were asked for permission to invite their next of kin for an interview. They themselves decided which significant other should be asked.
After the interview, the 2 interviewers reflected together on their experience of the interview and what they had learnt about EL during the interview. They also wrote a description concerning the informants’ situation and other contextual aspects. The interviews were recorded and transcribed. The first paper was analyzed with a phenomenological hermeneutical analysis [
In all, 19 significant others were interviewed concerning their experience of encountering EL among their relatives. The informants were identified by the interviewed patients and residents (as described above), and were spouses, children, siblings, or other persons identified by the older person as being close to them. The interviews were performed as individual narrative interviews, with a focus on narrations about the experience of EL among their relatives. The majority of these interviews were performed by 2 researchers working as a pair, as described earlier. The interview started with an introduction to the concepts of loneliness and EL, and the informants were then asked if they could recall a situation when their relative expressed a feeling of a deeper sense of loneliness or EL. Follow-up questions were asked, such as “How did you notice?,” “Do you remember what you thought and felt?,” and “How did you handle the situation?”. The interviews were recorded, transcribed, and analyzed using conventional qualitative content analysis [
In total, 11 focus group interviews with HCPs were performed. A focus group interview is based on the idea that people develop their views and narrations about their experiences in discussion with others [
The interviews with HCPs from home care, hospital, special accommodation, and palliative care were analyzed with the material grouped according to context. The characteristics of each context were noted and compared, with a focus on the narratives of the HCPs. The material was analyzed using case study methodology [
According to the MRC [
We will also construct a preliminary outline of the intervention aimed at supporting HCPs in encountering EL, using concept mapping [
This project involves several sensitive issues that need to be carefully reviewed. We are aware that the topic concerns a sensitive matter and that the study group is very vulnerable. We have, therefore, applied an ethical consciousness throughout the project. The voluntary nature of participation by patients, significant others, and HCPs has been emphasized in the information given out about the project and again before the interviews began. All participants gave their written informed consent to participate in the study. A contact person at each involved clinic, health care center, and special accommodation had the main responsibility of making the initial contact with the patients and residents that met the inclusion criteria so as to provide initial information about the project and ask if the researchers could contact them. The researchers then provided oral and written information about the study. After the interview, the contact person was responsible for observing whether the patient or resident had a need for a follow-up discussion. Other staff at the facility did not have any information about which patients or residents were included in the study. Following the interviews with the significant others, one of the interviewers contacted each participant by phone 2 days after the interview to ask whether they had any questions or thoughts that were awakened by the interview. Different pairs of interviewers performed the interviews with the patients or residents and the significant others to ensure that the interview with the significant other was not affected by knowledge about the patient or resident. This also prevented the risk of the significant other receiving information about what the patient or resident had said in their interview, as the researchers interviewing the significant other did not have this information.
All participants gave their written informed consent to participate in the study. The study has been approved by the Regional Ethical Review Board in Lund, Sweden (ref: 2014-652).
Due to the sensitive matter of the interviews and the fact that they are in Swedish, raw data will primarily not be made available for researchers outside the research group.
The studies aiming at identifying the evidence base and developing a theoretical frame for an intervention have so far resulted in 7 published papers from 2018 to 2019 and are summarized below.
The concept analysis [
EL is the immediate awareness of being fundamentally separated from other people and from the universe, and typically, because of this awareness, experiencing negative feelings, that is, moods and emotions.
The crucial difference between subjective experience of being socially alone and EL appeared to be that social loneliness is about lacking intimate social relations, whereas EL is concerned with a more basic lack, namely, a feeling of being fundamentally separated from others and the world, whether or not one has a family, friends, or other close acquaintances. Thus, you might have close relations and not suffer from loneliness yet still experience EL [
The 2 studies focusing on frail older people’s experience of EL [
The study focusing on significant others [
The study focusing on health care staff’s experience of encountering older people with EL [
So far, the impact of context has been analyzed in relation to the narratives from HCPs [
The results from the already published studies will now form the basis for the modeling process and the outcomes of the intervention. So far, we can conclude that an intervention targeting HCPs most certainly needs to be flexible and adjustable to different care contexts and designed as a pragmatic trial [
During the progress of the studies performed so far, new areas of interest have emerged, such as contribution from volunteers, the perspective of managers in aged care settings, what kind of support significant others might need, and to what extent coordinators of support to relatives focus on EL in support groups. These studies are at present in progress and will also contribute to the overall design of the intervention program.
All qualitative research should be evaluated in terms of trustworthiness, including credibility, dependability, confirmability, and transferability [
The confidentiality of the participants and the different care facilities involved has been maintained. Documentation of informed consent is kept in a safe, separate from the interview material, and it is thus impossible to link it to the interviews. Original recordings of the interviews are kept on a separate, protected hard drive. The transcripts have been coded, and names, places, and other information that might indicate or reveal the identity of the participants have been omitted. One of the junior researchers was assigned to act as a coordinator to collect and register all informed consent forms from the managers and the patients, and to act as a link between the researchers, the patients and residents, the significant others, and the HCPs. This coordinator was also responsible for storage of the informed consent documentation in a safe. All transcribed material has been organized and is kept in a separate safe. In seeking ethical approval for the study, we stated that the material will not be used for any other purposes and will therefore not be made available to any researchers outside the research group.
The research group includes 5 senior and 3 junior researchers and 3 doctoral students, representing 3 universities in Southern Sweden. The research group also represents several areas, such as nursing, caring sciences, medical ethics, and human geography, thus increasing the possibility to illuminate the phenomenon and concept from different perspectives.
The proportion of older people in the population is constantly increasing, and a growing number of older people will thus be the focus of care and services. The quality of care and services for older people is often debated in the media, usually from a perspective of misery. The present research project will contribute to knowledge that can strengthen HCPs and increase the well-being of patients and residents in the last phase of life. The studies are highly relevant from a human perspective in general, as death will inevitably strike us all, and for the situation of the HCPs in particular, as existential issues are one of the largest challenges in nursing care and care of older people. Knowledge and consciousness about different prerequisites for supporting patients, and their significant others’, experience of meaning at the end of life depending on the context of care provision also provides us with a basis for the development of an intervention directed toward increasing the ability of the HCPs to counter EL. This, in turn, will have a positive impact on the quality of care.
existential loneliness
health care professionals
Medical Research Council
The authors would like to thank the entire research group who participated in the design of this project: senior professor Ingalill Rahm Hallberg; professors Birgit Holriz Rasmussen and Kerstin Blomquist; senior lecturers Margareta Rämgård, Ingela Beck and Magdalena Andersson; and doctoral students Marina Sjöberg, Helena Larsson, and Malin Sundström.
This study is funded by grants from the Vårdal Foundation, the Crafoord Foundation, the Greta and Johan Kock Foundation, the Gyllenstiernska Krapperup Foundation, the Research Platform for Health for Collaboration at Kristianstad University and Malmö University.
A-KE and IB outlined the study, and A-KE had the main responsibility for drafting the protocol. The entire research group reviewed the manuscript, and both authors agreed on the final version.
None declared.