Existential Loneliness Among Older People from the Perspective of Health Care Professionals: A European Multicenter Study.

Introduction: Health care professionals (HCPs) encounter different forms of loneliness in their work. It is essential that they have the courage, skills, and tools to deal with loneliness, in particular with existential loneliness (EL) which relates to meaning in life and the fundamentals of living and dying. Aim: The aim of this study was to investigate HCPs' views on loneliness among older people and their understanding, perception, and professional experience of EL in older people. Materials and Methods: In all, 139 HCPs from five European countries participated in audio-recorded focus group and individual interviews. The transcribed materials were locally analyzed using a predefined template. The participating countries' results were then translated, merged, and inductively analyzed using conventional content analysis. Results: Participants described different forms of loneliness - a negative form that is unwanted and causes suffering, and a positive form where solitude is desired and sought. The results showed that the HCPs' knowledge and understanding of EL varied. The HCPs mainly related EL to different types of loss, eg loss of autonomy, independence, hope, and faith, and to concern alienation, guilt, regret and remorse, and concerns about the future. Discussion and Conclusions: The HCPs expressed a need to improve their sensitivity and self-confidence to engage in existential conversations. They also stated the need to increase their knowledge and understanding of aging, death, and dying. Based on these results, a training program aimed to increase knowledge and understanding of older people's situation has been developed. The program includes practical training in conversations about emotional and existential aspects, based on recurrent reflections on the topics presented. The program is available at: www.aloneproject.eu.

Existential aspects documented in older people's patient records in the context of specialized palliative care: a retrospective review.

BACKGROUND: Documentation of older people's end-of-life care should cover the care given and provide an overview of their entire situation. Older people approaching the end of life often have complex symptoms, live with bodily losses, and face an unknown future in which existential aspects come to the forefront. Knowledge of the existential aspects recorded in palliative care documentation is sparse and merits improvement. This knowledge is relevant to the development of more holistic documentation and is necessary in order to promote reflection on and discussion of documentation of the sensitive existential considerations arising in palliative care. The aim of this study was to describe the documentation of existential aspects in the patient records of older people receiving specialized palliative care. METHODS: Data were obtained from a retrospective review of the free-text notes in 84 records of randomly selected patients aged ≥75 years enrolled in specialized palliative care units who died in 2017. The notes were analysed using an inductive qualitative content analysis. RESULTS: The notes documented existential aspects in terms of connotations of well-being and ill-being. Documented existential aspects were related to the patients' autonomy concerning loss of freedom and self-determination, social connectedness concerning loneliness and communion, emotional state concerning anxiety and inner peace, and state of being concerning despair and hope. The notes on existential aspects were, however, not recorded in a structured way and no care plans related to existential aspects were found. CONCLUSIONS: Existential aspects concerning both ill-being and well-being were sparsely and unsystematically documented in older people's patient records, but when notes were extracted from these records and analysed, patterns became evident. Existential aspects form an important basis for delivering person-centred palliative care. There is a need to develop structured documentation concerning existential aspects; otherwise, patients' thoughts and concerns may remain unknown to healthcare professionals.

Deeply lonely in the borderland between childhood and adulthood - Experiences of existential loneliness as narrated by adolescents.

BACKGROUND: Adolescence is associated with different feelings and experiences that can negatively affect adolescents' health and well-being. In the transition between childhood and adulthood, experiences of loneliness are common. A deep form of loneliness is described as existential loneliness. Studies among adults have shown that existential loneliness often arises in connection with transitions and is related to suffering, but may lead to positive experiences when acknowledged and addressed. Therefore, the aim of this study was to explore adolescents' experiences of existential loneliness. METHODS: This was an exploratory-descriptive qualitative study based on narrative interviews with 16 adolescents (median age 17.5). The data were analysed inductively using qualitative content analysis. FINDINGS: Existential loneliness among adolescents was related to experiences of social exclusion and "in-betweenness". To alleviate their suffering, the adolescents tried to avoid burdensome feelings and thoughts, and they chose between sharing or not sharing their inner lives with someone else. CONCLUSIONS: It is important to support adolescents' sense of belonging, and they may need assistance in dealing with existential loneliness, as well as with finding constructive and healthy ways of recuperating from the suffering. Professionals need knowledge of existential loneliness to promote adolescents' existential health and well-being.

Sadness and Other Health Complaints among Swedish Adolescents: A Cross-Sectional Study.

Health complaints are increasing among adolescents and are recognized as a global public health issue. Health complaints are an indicator for subjective ill-being, but little is known about the relationship between sadness and other health complaints. The aim of this study was to investigate sadness and other health complaints among Swedish adolescents. A survey with a cross-sectional design was completed by adolescents (n = 1489, 15-17 years old) in the south of Sweden. A logistic regression analysis was used to analyze the relationship between sadness and other health complaints. The result show that sadness and other health complaints were common among adolescents, and sadness was related to health complaints (headache (OR: 1.58), sleeping difficulties (OR: 2.00), reduced appetite (OR: 1.43), tension (OR: 2.44), and concentration difficulties (OR: 2.75)). When adolescents express sadness or other health complaints it is important to reflect on what these complaints are an expression of, and take into account the body as physical and psychological intertwined. This might entail person-centered support that hopefully leads to an improvement in adolescents' well-being. Future research that profoundly highlights adolescents' existential health is needed.

Being a volunteer encountering older people's loneliness and existential loneliness: alleviating loneliness for others and oneself.

BACKGROUND: The increasing proportion of older people worldwide is challenging society and the healthcare sector to develop new solutions, such as involving volunteers, especially to combat loneliness among older people. Loneliness is a broad concept comprising, for example existential loneliness - a deep feeling of aloneness in the world. We know little about volunteers' experience of encountering older people's loneliness in general and existential loneliness in particular. Such knowledge is important in order to develop high-quality volunteering. AIM: This study aimed to describe volunteers' experience of becoming and being a volunteer, and encountering older people's loneliness in general and existential loneliness in particular. METHODS: This descriptive qualitative study is based on eight focus group interviews and twelve individual interviews with volunteers from different organisations, analysed using conventional content analysis. FINDINGS: Being a volunteer meant being a fellow human being, alleviating loneliness for others and oneself. Becoming a volunteer was a way of finding meaning, and volunteering made the volunteers feel rewarded and simultaneously emotionally challenged. Being a volunteer also meant acting on one's values, challenging boundaries when necessary. Encountering loneliness, including existential loneliness, required sensitivity to others' needs for both closeness and distance. CONCLUSION: Being a volunteer benefitted not only the older persons the volunteers met, but also the volunteers' own sense of meaning, by alleviating their own loneliness. Sharing existential thoughts and having meaningful conversations about life and death are challenging, but can contribute to the personal growth of the volunteers themselves. It is important to remember that not all volunteers are confident in having existential conversations, so it is important to pay attention to each volunteer's prerequisites and needs. In addition, there is a need for support to volunteers' engagement such as clarifying their role and clarifying the responsibility and expectations from health and social care.

Exploring Existential Loneliness Among Frail Older People as a Basis for an Intervention: Protocol for the Development Phase of the LONE Study.

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.

Loneliness among older people living in care homes in Sri Lanka.

AIM AND OBJECTIVES: The aim of this study was to explore loneliness in older people (aged 65+) living in care homes in Colombo, Sri Lanka. BACKGROUND: Loneliness, defined as the subjective, unwelcome feeling of the lack or loss of companionship, is known to be associated with old age, especially among older people living in care homes. Although several studies have shown that loneliness is highly prevalent, we lack knowledge about older people's personal experience of loneliness when residing in a care home and the strategies that older people use by themselves on a day-to-day basis to alleviate loneliness. METHODS: The participants (n = 75) were randomly selected from three different types of care homes: governmental, non-governmental and private, and loneliness was screened using the Revised University of California-Los Angeles (R-UCLA) Loneliness Scale. The 15 participants with the highest score on the loneliness scale were purposively selected for individual interviews. RESULTS: The median loneliness score was 45 (range 20-80); no significant differences concerning loneliness were found between the care homes. No differences concerning loneliness were found for any demographic variable except marital status. Loneliness was experienced as coping with inner pain, which older people described as emotional suffering caused by feeling abandoned from the family network and fettered to the care home, anxious about their future and depressed. Participants managed their loneliness by accepting their loneliness, practising religion, staying in touch with family, engaging in daily activities and participating in social activities. CONCLUSION: Reliable and socio-culturally validated tools for screening loneliness and culturally applicable interventions targeting factors associated with loneliness are necessary in the care of older people residing in care homes. A person-centred approach involving family or significant others is recommended in clinical practice, and an increase in the number of nurses with specialist education in geriatric nursing seems urgent.

The context of care matters: Older people's existential loneliness from the perspective of healthcare professionals-A multiple case study.

AIM: To explore existential loneliness among older people in different healthcare contexts from the perspective of healthcare professionals. BACKGROUND: Professionals meet and care for older people in most care contexts and need to be prepared to address physical, psychological, social and existential needs. Addressing existential loneliness can be both challenging and meaningful for professionals and is often not prioritised in times of austerity. DESIGN: A multiple case study design was used. METHODS: Focus group interviews were conducted with healthcare professionals (n = 52) in home, residential, hospital and palliative care settings. The analysis was performed in two steps: firstly, a within-case analysis of each context was conducted, followed by a cross-case analysis. FINDINGS: Differences and similarities were observed among the care contexts, including for the origin of existential loneliness. In home care and residential care, the focus was on life, the present and the past, compared to hospital and palliative care, in which existential loneliness mainly related to the forthcoming death. The older person's home, as the place where home care or palliative care was received, helped preserve the older person's identity. In hospital and palliative care, as in institutional care, the place offered security, while in residential care, the place could make older people feel like strangers. Creating relationships was considered an important part of the professionals' role in all four care contexts, although this had different meanings, purposes and conditions. CONCLUSIONS: The context of care matters and influences how professionals view existential loneliness among older people and the opportunities they have to address existential loneliness. IMPLICATIONS FOR PRACTICE: Support for professionals must be tailored to their needs, their education levels and the context of care. Professionals need training and appropriate qualifications to address existential loneliness related to existential aspects of ageing and care.

Contrasts in older persons' experiences and significant others' perceptions of existential loneliness.

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 = 15) and interviews with their significant others (n = 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.

Being acknowledged by others and bracketing negative thoughts and feelings: Frail older people's narrations of how existential loneliness is eased.

AIMS AND OBJECTIVES: The aim of this study was to describe how EL was eased, as narrated by frail older people. BACKGROUND: Existential loneliness (EL) is an unavoidable part of the human condition. It is a complex phenomenon that has been described as disconnection from life. If EL is acknowledged in the care of older people, the experience of EL can be reduced. DESIGN: In this qualitative study, we used an exploratory and descriptive design. METHODS: The study was based on 22 narrative interviews with frail older people, 76 to 101 years old, who were receiving long-term care and services. We analysed the data using conventional content analysis. RESULTS: Being acknowledged by others, that is, being the focus of others' concern, eased the experience of EL, as did encountering intimacy and having meaningful exchanges of thoughts and feelings. Further, EL was pushed into the background and eased when participants could bracket negative thoughts and feelings, that is, when they could adjust and accept the present situation, view life in the rear-view mirror, be in contact with spiritual dimensions and withdraw and distract themselves. CONCLUSION: Existential loneliness can be eased by experiencing meaningful togetherness with others and oneself when something else comes to the forefront, pushing EL to the background. Frail older peoples' opportunities to ease EL may be facilitated by health care staff (HCS) providing person-centred care and create possibilities for solitary time and meaningful togetherness. IMPLICATIONS FOR PRACTICE: If frail older people's ongoing processes of adjusting and accepting their situation are understood and confirmed by people in their environment, for example, by nurses, family and friends, the experience of living a meaningful life can be supported, which, in turn, can ease EL.

Understanding User Involvement in Research in Aging and Health.

User involvement in research is advocated as an avenue for efficient societal developments. In this article, we identify potentials, problems, and challenges related to research on aging and health, and identify and illustrate research priorities using an evolving research program as an example. Involving user representatives in the development phase, the UserAge program engages researchers at four universities in Sweden. The program builds upon previous and ongoing research with user involvement. The goals are to maximize the impact of user involvement, enhance the execution of high-quality research, increase the knowledge about what difference user involvement can make, and evaluate the impact of research about and with user involvement. Taken together and communicated in the international scientific community as well as in a wide range of public arenas, the empirical results, capacity-building, and modeling efforts of UserAge will have an impact not only on the present situation but also on the future.

The Impact of Living with Parkinson's Disease: Balancing within a Web of Needs and Demands.

This study explores the impact of living with Parkinson's disease (PD). Nineteen persons (11 women) aged 55-84 diagnosed with PD 3-27 years ago participated. Data were collected through semistructured interviews, which were recorded, transcribed verbatim, and analysed by qualitative content analysis. Four categories represented the impact of living with PD: "Changed prerequisites for managing day-to-day demands," "Loss of identity and dignity," "Compromised social participation," and "The use of practical and psychological strategies." There was a shift from an internal to an external locus of control in managing, control, competence, relatedness, and autonomy. According to self-determination theory, a shift towards extrinsically motivated behaviours may occur when these basic needs are thwarted, leading to compensatory strategies or needs substitutes with negative consequences on health and well-being. We suggest a needs-based approach as an important starting point to better understand the consequences of living with PD and to explore the means for people with PD to acquire an improved quality of life on their own terms. In conclusion, our findings suggest for a shift in focus, from a biomedical to a needs-based approach to understand the impact of living with PD and facilitate more person-centred care and person-centred outcome measurement.

Encountering existential loneliness among older people: perspectives of health care professionals.

PURPOSE: Existential loneliness is part of being human that is little understood in health care, but, to provide good care to their older patients, professionals need to be able to meet their existential concerns. The aim of this study was to explore health care professionals' experiences of their encounters with older people they perceive to experience existential loneliness. METHOD: We conducted 11 focus groups with 61 health professionals working in home care, nursing home care, palliative care, primary care, hospital care, or pre-hospital care. Our deductive-inductive analytical approach used a theoretical framework based on the work of Emmy van Deurzen in the deductive phase and an interpretative approach in the inductive phase. RESULTS: The results show that professionals perceived existential loneliness to appear in various forms associated with barriers in their encounters, such as the older people's bodily limitations, demands and needs perceived as insatiable, personal shield of privacy, or fear and difficulty in encountering existential issues. CONCLUSION: Encountering existential loneliness affected the professionals and their feelings in various ways, but they generally found the experience both challenging and meaningful.

Being disconnected from life: meanings of existential loneliness as narrated by frail older people.

OBJECTIVES: This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people. METHOD: Data were collected through individual narrative interviews with 23 people 76-101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naïve reading and two structural analyses as a basis for a comprehensive understanding of EL. RESULT: Four themes were identified related to meanings of EL: (1) being trapped in a frail and deteriorating body; (2) being met with indifference; (3) having nobody to share life with; and (4) lacking purpose and meaning. These intertwined themes were synthesized into a comprehensive understanding of EL as 'being disconnected from life'. CONCLUSION: Illness and physical limitation affects access to the world. When being met with indifference and being unable to share one's thoughts and experiences of life with others, a sense of worthlessness is reinforced, triggering an experience of meaninglessness and EL, i.e. disconnection from life. It is urgent to develop support strategies that can be used by health care professionals to address older people in vulnerable situations, thereby facilitating connectedness.

Ethical aspects of a predictive test for Huntington's Disease: A long term perspective.

BACKGROUND: A predictive genetic test for Huntington's disease can be used before any symptoms are apparent, but there is only sparse knowledge about the long-term consequences of a positive test result. Such knowledge is important in order to gain a deeper understanding of families' experiences. OBJECTIVES: The aim of the study was to describe a young couple's long-term experiences and the consequences of a predictive test for Huntington's disease. RESEARCH DESIGN: A descriptive case study design was used with a longitudinal narrative life history approach. PARTICIPANTS AND RESEARCH CONTEXT: The study was based on 18 interviews with a young couple, covering a period of 2.5 years; starting 6 months after the disclosure of the test results showing the woman to be a carrier of the gene causing Huntington's disease. ETHICAL CONSIDERATIONS: Even though the study was extremely sensitive, where potential harm constantly had to be balanced against the benefits, the couple had a strong wish to contribute to increased knowledge about people in their situation. The study was approved by the ethics committee. FINDINGS: The results show that the long-term consequences were devastating for the family. This 3-year period was characterized by anxiety, repeated suicide attempts, financial difficulties and eventually divorce. DISCUSSION: By offering a predictive test, the healthcare system has an ethical and moral responsibility. Once the test result is disclosed, the individual and the family cannot live without the knowledge it brings. Support is needed in a long-term perspective and should involve counselling concerning the families' everyday life involving important decision-making, reorientation towards a new outlook of the future and the meaning of life. CONCLUSION: As health professionals, our ethical and moral responsibility thus embraces not only the phase in direct connection to the actual genetic test but also a commitment to provide support to help the family deal with the long-term consequences of the test.

The shift from a medical to a nursing orientation: A comparison of Swedish nursing students' expectations when entering the nursing degree programme in 2003 and 2013.

BACKGROUND: The focus of education in nursing has changed over time with a decreased focus on biomedicine and an increased focus on nursing science. It is therefore important to investigate whether these changes are also reflected in the students' conceptions and expectations of the programme over time. OBJECTIVES: The aim of the study was to describe and compare two cohorts of students entering the nursing programme with 10year in between (2003 and 2013), regarding their demographic background, reasons for wanting to become a registered nurse, expectations of the programme and perceptions of the nursing profession. DESIGN AND SETTING: The study was a descriptive cross-sectional cohort study carried out at a university in southern Sweden. PARTICIPANTS: In all, 177 nursing students participated in the study, 89 from the 2003 cohort and 88 from the 2013 cohort. METHODS: Data were collected at the start of the programme using a questionnaire consisting of predefined and open-ended questions. The responses were statistically analysed and compared. RESULTS: The students' reasons for wanting to become a registered nurse remained stable over the 10-year period. The main reason stated by the students in both cohort was humanitarian, i. e wanting to help others. The students' expectations regarding both the programme and the nursing profession had, however, changed significantly from a biomedical to a nursing orientation in the 10-year perspective. CONCLUSIONS: The change in the students' preconceptions of the nursing education towards increasing importance of nursing science indicates the beginning of a paradigm shift.

The Development of the strain in dementia care scale (SDCS).

BACKGROUND: Though many staff gain satisfaction from working with people with dementia in residential facilities, they also experience significant stress. This is a serious issue because this in turn can affect the quality of care. There is, however, a lack of instruments to measure staff strain in the dementia-specific residential care environment, and the aim of this study, accordingly, was to develop the "Strain in Dementia Care Scale." METHODS: The instrument was developed in three steps. In the first step, items were derived from six focus group discussions with 35 nurses in the United Kingdom, Australia, and Sweden concerning their experience of strain. In the second step, a preliminary 64-item scale was distributed to 927 dementia care staff in Australia and Sweden, which, based on exploratory factor analysis, resulted in a 29-item scale. In the final step, the 29-item scale was distributed to a new sample of 346 staff in Sweden, and the results were subjected to confirmatory factor analysis. RESULTS: The final scale comprised the following 27 items producing a five-factor solution: Frustrated empathy; difficulties understanding and interpreting; balancing competing needs; balancing emotional involvement; and lack of recognition. CONCLUSIONS: The scale can be used (a) as an outcome measurement in residential care intervention studies; (b) to help residential facilities identify interventions needed to improve staff well-being, and, by extension, those they care for; and

Swedish politicians' view of obstacles when dealing with priority settings in health care.

PURPOSE: The purpose of this paper is to identify and describe main obstacles for politicians when dealing with healthcare priority setting. DESIGN/METHODOLOGY/APPROACH: The study had an exploratory descriptive design based on interviews with 18 politicians from two different county councils in Sweden. The interviews were analyzed using inductive qualitative content analysis. FINDINGS: The politicians highlighted the importance of, and difficulties in, communicate political missions; the politicians in this study saw the media as not always being fair watchdogs, implying that possibly important but unpopular prioritizing decisions were not made because of the risks of being badly reported and therefore not re-elected. Breaking up established structures in care practice is difficult and change takes time, partly because of existing higher level financing and rules and the system's traditional separation of facilities and services. Although the politicians highlighted their limited power to influence and control resource allocation they could give small and "lower profile", low-prioritized disciplines control of their own budgets and base payments on the results the disciplines accomplished. ORIGINALITY/VALUE: This study highlights the difficulties that politicians experience, for example, having to take unpleasant decisions and thereby run the risk of being scrutinized by media, which in turn could influence how effectively tax money is being used.

Applying a palliative care approach in residential care: effects on nurse assistants' work situation.

OBJECTIVES: The aim was to investigate the effects of an intervention that applies a palliative care approach in residential care upon nurse assistants' level of strain, job satisfaction, and view of leadership. METHOD: A quasi-experimental, pretest and posttest design was used. Study circles with workshops involving nurse assistants (n = 75) and their superiors (n = 9) focusing on emotional and existential issues in palliative care were evaluated using a questionnaire answered by the nurse assistants at baseline (November 2009), post-intervention (May 2010), and six-month follow-up (November 2010) in comparison with controls (n = 110). RESULTS: Directly after the intervention, the job satisfaction of the nurse assistants decreased and they perceived the leadership more negatively than before the intervention. Six months later, strain as a result of criticism from residents and their superiors and having difficulty in balancing emotional involvement had decreased. SIGNIFICANCE OF RESULTS: The intervention initially seemed to decrease the well-being of the nurse assistants, which could be the result of their increased awareness of the residents' and relatives' needs, in combination with limited support. More emphasis should be placed on the role of leadership when implementing changes in practice.