Background: As frail older people might have difficulties in expressing themselves, their needs are often interpreted by others, for example, by significant others, whose information health care staff often have to rely on. This, in turn, can put health care staff in ethically difficult situations, where they have to choose between alternative courses of action. One aspect that might be especially difficult to express is that of existential loneliness. We have only sparse knowledge about whether, and in what way, the views of frail older persons and their significant others concerning existential loneliness are in concordance. Objective: To contrast frail older (>75) persons’ experiences with their significant others’ perceptions of existential loneliness. Methods: A case study design was chosen for this study. Individual interviews with frail older persons (n ¼ 15) and interviews with their significant others (n ¼ 19), as well as field notes, served as a basis for the study. A thematic analysis was used to interpret data. Ethical considerations: This study was conducted in accordance with the principles of research ethics. Findings: The findings showed three themes: (1) Meaningless waiting in contrast to lack of activities, (2) Longing for a deeper connectedness in contrast to not participating in a social environment and (3) Restricted freedom in contrast to given up on life. Discussion: Knowledge about the tensions between older persons’ and their significant others’ views of existential loneliness could be of use as a basis for ethical reflections on the care of older people and in the encounter with their significant others. Conclusion: It is of importance that health care professionals listen to both the frail older person and their significant other(s) and be aware of whose voice that the care given is based on, in order to provide care that is beneficial and not to the detriment of the older person. Keywords case study, existential loneliness, frail older person, significant other, thematic analysis

Abstract Background: According to ethical guidelines, healthcare professionals should be able to provide care that allows for the patients’ values, customs and beliefs, and the existential issues that are communicated through them. One widely discussed issue is existential loneliness. However, much of the debate dealing with existential loneliness concludes that both the phenomenon and the concept are quite vague. Aim: To clarify what constitutes existential loneliness, and to describe its lived experiences. A further aim was to provide a definition of existential loneliness that can function as a tool for identifying the phenomenon and for differentiating it from other kinds of loneliness. Method: A literature review including theoretical and empirical studies. Different search strategies were used to gather the articles included in the study. The analysis of the empirical studies had an interpretative approach. The articles were also analysed with the aim of providing a definition of existential loneliness. This was done by means of criteria such as language, uniqueness, theory and usefulness. This study is not empirical and does therefore not require an ethics review. Results: The analysis resulted in two main characteristics. The first one was perceiving oneself as inherently separated (disconnected) from others and from the universe. The second one brings out emotional aspects of EL, such as isolation, alienation, emptiness and a feeling of being abandoned. The empirical findings were divided into two categories: experiences of EL and circumstances in which EL arises. A definition of EL is also suggested, based on the two main characteristics identified. Conclusion: In order to meet patients’ needs, it is an ethical duty for healthcare staff to be able to recognise experiences of EL, that is, to communicate with the patients about these experiences in an appropriate manner. This in turn demands knowledge about existential issues and skills to deal with them.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/13607.

This study aimed at exploring how women from Iraq and the former Yugoslavia, diagnosed with breast cancer and living in Sweden, experience their everyday life during radiation therapy. A qualitative research design was used comprising interviews with ten women, five originating from Iraq and five from the former Yugoslavia. Striving to survive, the women experienced their everyday life during radiation therapy as extremely challenging. This experience can be placed into three categories: strategies for survival, keeping up appearances and staying in control. Because of these specific challenges, immigrant women may need additional information and guidance in conjunction with the diagnosis, which may enable them to identify possible sources of support from those closest to them. Also, greater attention should focus on acknowledging the woman behind the diagnosis, regardless of her origin, to develop an individualised support programme to help her cope with everyday life during radiation therapy.

Purpose: When a woman is diagnosed with breast cancer, it affects all family members. Therefore, the aim of this study was to elucidate family members lived experience when a family member is diagnosed with breast cancer. Method: The study had a hermeneutic phenomenological design including individual conversational interviews conducted face-to-face with six women with breast cancer and their family members at two different points of time, in order to elucidate families' lived experience, both as individuals and as a unit, from each family member's perspective. Results: Living as a family in the presence of breast cancer is a challenging endeavour to regain an ordinary, safe life, hoping to reach a safe haven. The families felt that life as they knew it had disappeared and they were fumbling in the dark, trying to find support and guidance on their path to ordinary life. The family members were pursuing balance by attempting to keep the family together and maintaining a positive attitude while battling against fear and treatment-related side effects. Finally, the families were struggling with guilt and inadequacy, due to their difficulties in communicating the emotional distress that the illness brought upon them, at the same time as they felt abandoned by the healthcare professionals. Conclusions: Families experience an unmet need of information and support, which implies that healthcare professionals may want to acknowledge and include the family already at the time of diagnosis in order to help them endure and cope with the distressing experience and thus increase their wellbeing.

Background: In order to better understand people in demanding medical situations, an awareness of existential concerns is important. Studies performed over the last twenty years conclude that when dying and death come closer, as in the case with older people who are stricken by infirmity and diseases, existential concerns will come to the fore. However, studies concerning experiences of existential loneliness (EL) are sparse and, in addition, there is no clear definition of EL. EL is described as a complex phenomenon and referred to as a condition of life, an experience, and a process of inner growth. Listening to someone who knows the older person well, as significant others often do, may be one way of learning more about EL. Methods: This study is part of a larger research project on EL, the LONE study, where EL is explored through interviews with frail older people, their significant others and health care professionals. The aim of this study was to explore frail older (>75) persons’ EL, as interpreted by their significant others. The study is qualitative and based on eighteen narrative interviews with nineteen significant others of older persons. The data was analysed using Hsieh and Shannon’s conventional content analysis. Results: According to the interpretation of significant others, the older persons experience EL (1) when they are increasingly limited in body and space, (2) when they are in a process of disconnecting, and (3) when they are disconnected from the outside world. Conclusion: The result can be understood as if the frail older person is in a process of letting go of life. This process involves the body, in that the older person is increasingly limited in his/her physical abilities. The older person’s long-term relationships are gradually lost, and finally the process entails the older person’s increasingly withdrawing into him- or herself and turning off the outside world. The result of this study is consistent with previous research that has shown that EL is a complex phenomenon, but the implications of this research include a deepened understanding of EL. In addition, the study highlights the interpretations of significant others.

Background: Many risk factors for heart disease can be reduced by lifestyle modifications such as physical activity, but the attitude to and the knowledge about the beneficial effect of physical activity vary among the population. Migrant women are reported to have a higher BMI and to be less physically active than the Swedish-born women. In order to motivate them to participate in physical activity it is necessary to understand that they are not a homogenous group, and thus their knowledge about, needs for, and attitude to physical activity have to be examined. Aim: The aim of the study was to explore structural and individual factors working either as barriers against or as motivation for a change towards higher levels of physical activity and a healthy lifestyle. Furthermore, the aim was to investigate if the migration had changed the women's level of physical activity and what would be required to increase it. Method: Seven women from Bosnia living in Malmo, Sweden, were interviewed by means of a semi-structured interview guide. The data was analyzed using Burnard's content analysis method. Results: The findings were presented in two categories, namely, "barriers against physical activity" and "motivational factors for physical activity". With regard to the category "barriers against physical activity", the move to Sweden had led to losses and shifts in lifestyles for the women. The greatest lifestyle changes were reported among women who had moved from rural areas in Bosnia to urban areas in Sweden. They found it troublesome to reach the same activity level in Sweden and expressed a greater need to do so. Earlier negative experiences or no experiences at all, of performing physical activity, as well as the winter climate, were seen as obstacles to being active. All the women prioritized family, work, school, and club activities above physical activity. With respect to the category "motivational factors for physical activity", it was found that physical activity could help improve their mental balance, and the women also considered the possibility of losing weight. Conclusion: The study showed that although these migrant women had difficulties finding appropriate and realistic physical activities, and prioritized family activities, they desired to be more physically active, even if the climate was seen as a hindrance. They also reported that physical activity could be a means to achieve better mental health as well as weight loss. Politicians ought to allocate funding, and public health worker to focus more on and enable this high risk group of immigrant women to become more physical active. They should also be informed about their increased risk of myocardial infarction. This, to stimulate increased physical activity among them and in ought to be in co-working with their own immigrant organization.

BACKGROUND: There is a lack of knowledge about sibling stem cell donors' experiences pre-donation and the waiting period before the donation might have been long. The donors and their corresponding sibling recipients were simultaneously included in two different interview studies. The results from the recipient study have been presented in a separate paper. PURPOSE: The aim was to explore the experiences of being a stem cell donor for a sibling, prior to donation. METHOD: Ten adult sibling donors were interviewed prior to stem cell donation. The interviews were digitally recorded, transcribed verbatim and subjected to qualitative content analysis. RESULTS: The main theme Being a cog in a big wheel describes the complex process of being a sibling donor prior to donation, covering a mixture of emotions and thoughts. The four subthemes Being available, Being anxious, Being concerned and Being obliged cover the various experiences. The sibling donors' experiences are influenced by the quality of the relationship with the sick sibling. CONCLUSIONS: Sibling stem cell donors go through a complex process once they have accidentally got involved in. They have been asked to become a donor; it was not a voluntary choice. In caring for sibling stem cell donors the nurses should be aware of the complexity of the process they experience and take into consideration their personal situation and needs. Providing optimal care for both sibling donors and their corresponding recipients is a challenge, and further improvement and exploration are needed.

Only one empirical study, the one by Zingmark, Norberg and Sandman published in 1995, explicitly focuses on at-homeness, the feeling of being metaphorically at-home, as a particular aspect of wellness. However, other studies reveal aspects of at-homeness, but if or how such aspects of at-homeness are related to each other is unclear. For this reason, the aim was to review Scandinavian nursing research related to at-homeness in the context of wellness-illness in severe and long-term conditions in order to take a step towards conceptual clarification of "at-homeness.'' The review included interpretive studies related to severe and long-term illness conducted in Sweden: 10 original articles and 5 doctoral theses. "At-homeness'' was found to be a contextually related meaning of wellness despite illness and disease embedded in the continuum of being metaphorically at-home and metaphorically homeless. This was characterized by three interrelated aspects and four processes: being safe through expanding-limiting experiences of illness and time, being connected through reunifying-detaching ways of relating, and being centred through recognition-non-recognition of oneself in the experience and others giving-withdrawing a place for oneself. This conceptualization is to be regarded as a step in conceptual clarification. Further empirical investigation and theoretical development of "at-homeness'' are needed. The conceptualization will be a step of plausible significance for the evaluation of interventions aimed at enhancing wellness for people with severe long-term illness, such as the frail elderly, and people with chronic illness or palliative care needs.