ABSTRACTAimTo cross‐culturally adapt a framework for person‐centred leadership in residential care for older people in Sweden.DesignThis study has an exploratory and descriptive design.MethodsThe translation procedure followed a cyclic process of translation into Swedish and back‐translation into English by two independent bilingual linguists. An evaluation of conceptual and semantic equivalence and comprehensiveness between the original English version and the translated Swedish version was performed by an expert committee. The translated version of the framework was validated by leaders (n = 34) in residential care, who assessed its relevance through a web form. The adaptation of the framework followed recommended guidelines for cross‐cultural adaptation.ResultsThe translation procedure resulted in two minor changes related to the wording in two descriptors. The results of the validation procedure showed that the framework is relevant for leaders in Swedish residential care for older people.ConclusionThe cross‐culturally adapted framework is useful and suitable for leaders in Swedish residential care for older people. The framework clarifies the leader's role and identifies leadership attributes and requirements for person‐centred leadership in residential care, thereby providing support to leaders by framing person‐centred leadership.Implications for the Profession and/or Patient CareThe framework can be used as a guide for leadership training and/or development initiatives in residential care. It can be further extended to nursing curriculums, leadership development programs, and organisational performance and development processes. It may also provide a foundation for policy and guidelines by establishing the activities required for leaders to promote person‐centredness in the care of older people.Reporting MethodThis study followed the STROBE checklist for cross‐sectional studies.Patient and Public ContributionThere was no patient or public contribution.

BACKGROUND:Person-centred care is based on ethical principles, and it is regarded as high-quality care. Care of older persons should embrace person-centredness. During the pandemic, older persons were highlighted as a vulnerable group at risk of developing serious illness and/or suffering death from COVID-19. Several pandemic-related measures were introduced in residential care facilities (RCFs) to reduce this risk, which influenced the possibilities to lead and provide a person-centred care. AIM:This study's aim was to explore ethical challenges in relation to person-centredness during the COVID-19 pandemic, from the perspective of leaders in RCFs. RESEARCH DESIGN:The study had a qualitative descriptive design. PARTICIPANTS AND RESEARCH CONTEXT:Semi-structured interviews were conducted with 26 leaders working in RCFs in Sweden. Data were analysed using conventional content analysis. ETHICAL CONSIDERATIONS:The study was approved by the Swedish Ethical Review Authority. The participants received oral and written information about the study and gave written consent. The study was conducted in accordance with the Declaration of Helsinki. FINDINGS:The overarching ethical challenge was Having to disregard the individual needs of the person in order to protect the group and society. This included (a) Protecting the group versus promoting the older person's autonomy; (b) Being forced to lead care based on uncertainty instead of evidence; (c) Striving to provide dignified care but lacking opportunities; and (d) Going far beyond ordinary duty and endangering one's own and the staff's health. DISCUSSION:The ethical challenges meant being torn between the person's individual needs and protecting the group and society, with clashing ethical principles as a consequence. CONCLUSIONS:The leaders faced ethical situations resulting in undignified and compromised person-centred care, which has implications for stakeholders and management who need to address the work conditions in RCFs.

AIMS AND OBJECTIVES:To describe first-line managers' (FLMs) views of the challenges faced by staff when encountering older people's existential concerns in home and residential care. METHODOLOGICAL DESIGN AND JUSTIFICATION:This cross-sectional study uses a combination of qualitative and quantitative methods. ETHICAL ISSUES AND APPROVAL:The study was approved by the Swedish Ethical Review Authority (ref. number 2014/652 ) and followed the guidelines of the Helsinki Declaration. RESEARCH METHODS:FLMs in home and residential care were randomly selected and invited to participate. A self-administered questionnaire was distributed online to 467 managers, 136 (29%) of whom completed it. RESULTS:About 80% of the FLMs reported that their staff members sometimes or frequently had conversations with the older people in their care about existential concerns, including the following topics: thoughts and feelings about meaning in life; losses and longing for meaningful relations; death, fears and uncertainty and supporting meaningful everyday life. About 75% of the managers also reported that their staff sometimes or often had conversations about existential concerns with one another. Major hindrances to existential conversations were reportedly cognitive impairment and aphasia among the older people and insecurity and unwillingness among the staff. Most managers (73%) reported that their staff received support when encountering existential concerns, mostly as individual support from managers or registered nurses. STUDY LIMITATIONS:The main limitation of this study is its low response rate, which is common for digital surveys. Nevertheless, the sample is considered to be representative; therefore, the study holds exploratory value. CONCLUSION:Regular conversations among staff, improved conversational skills and the ability to listen reflect on and perceive older people's perspective and life world are needed when encountering older people's existential concerns. FLMs play a crucial role in emphasising and planning staff support on a regular basis.

Among adolescents, loneliness is common. One kind of loneliness, existential loneliness, is understood as a painful part of the human condition. During adolescence, existential loneliness has been shown to be challenging to navigate independently. Therefore, this study aimed to explore Swedish adolescents' experiences of existential loneliness regarding receiving and providing support. This study had an exploratory qualitative design based on focus group discussions (n = 9) comprising 30 Swedish adolescents (median age 18). The data was analysed inductively using thematic analysis. The adolescents' experiences of existential loneliness regarding receiving and providing support were represented in four themes: Wanting to face existential loneliness alone, but seeking relief and support when needed; Wanting to share the experiences, but not knowing how or being afraid to bare the vulnerability; Wanting to share the experiences, but nobody is there; Supporting friends by trying to be there, but feeling insecure. In conclusion, knowledge of existential loneliness and a sensitivity to adolescents' personal needs is crucial. Supporting and being there for adolescents may increase their ability to encounter - their own or others' - experiences of existential loneliness, which could be promotive for their well-being and personal growth.

Experiences of loneliness are common during adolescence and previous research has shown these experiences to be related to physical and mental ill-being. However, there is limited knowledge of one kind of loneliness during adolescence - existential loneliness - which can challenge the possibilities of offering adequate support. Narrations of experiences in retrospect may lead to a deepened understanding of a phenomenon. Therefore, this study aims to describe the phenomenon of existential loneliness during adolescence through Swedish university students' retrospective written narratives (n = 67). The study has a qualitative design with a phenomenological approach, and the data were analysed inductively. The findings show that existential loneliness during adolescence means feeling empty and lost while painfully trapped in an alienating borderland in the search for belonging, sense of self, and meaning. This knowledge can be used as a basis for the development of interventions aiming at supporting adolescents' well-being.

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.

The number of older people needing care is increasing, and care is often provided by informal caregivers. The mission of family care advisors (FCAs) is to provide them with support; however, whether and how support in existential matters such as existential loneliness is provided is unclear. Therefore, the aim of this study was to describe FCAs’ views on existential loneliness, and existential support provided to relatives who act as informal caregivers to older people. A national survey was distributed to 349 FCAs in Sweden, response rate n = 120 (36%). The STROBE checklist was followed when presenting the study. Existential loneliness was viewed as thoughts about life and meaning (78%). Existential support was provided by dialogues (87%), visits (75%) and support groups (73%); 45% of FCAs stated that they had time to provide existential support and 27% reported having knowledge of how to encounter existential loneliness. FCAs provide existential support, but often lack experience, knowledge and time. Time and knowledge are important prerequisites for acknowledging existential needs.

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.

Abstract 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.

Abstract Background Palliative care focuses on identifying, from a holistic perspective, the needs of those experiencing problems associated with life-threatening illnesses. As older people approach the end of their lives, they can experience a complex series of problems that health-care professionals must identify and document in their patients’ records. Documentation is thus important for ensuring high-quality patient care. Previous studies of documentation in older people’s patient records performed in various care contexts have shown that such documentation almost exclusively concerns physical problems. This study explores, in the context of Swedish specialised palliative care, the content of documentation in older people’s patient records, focusing on documented problems, wishes, aspects of wellbeing, use of assessment tools, interventions, and documentation associated with the person’s death. Methods A retrospective review based on randomly selected records (n = 92) of older people receiving specialised palliative care, at home or in a palliative in-patient ward, who died in 2017. A review template was developed based on the literature and on a review of sampled records of patients who died the preceding year. The template was checked for inter-rater agreement and used to code all clinical notes in the patients’ records. Data were processed using descriptive statistics. Results The most common clinical notes in older people’s patient records concerned interventions (n = 16,031, 71%), mostly related to pharmacological interventions (n = 4318, 27%). The second most common clinical notes concerned problems (n = 2804, 12%), pain being the most frequent, followed by circulatory, nutrition, and anxiety problems. Clinical notes concerning people’s wishes and wellbeing-related details were documented, but not frequently. Symptom assessment tools, except for pain assessments, were rarely used. More people who received care in palliative in-patient wards died alone than did people who received care in their own homes. Conclusions Identifying and documenting the complexity of problems in a more structured and planned way could be a method for implementing a more holistic approach to end-of-life care. Using patient-reported outcome measures capturing more than one symptom or problem, and a systematic documentation structure would help in identifying unmet needs and developing holistic documentation of end-of-life care.

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.

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.

Encountering older persons’ existential issues : First-line managers’ views on staff’s and volunteers’ possibilities, obstacles and need for support

Family care advisors’ views on existential loneliness and existential support provided to informal caregivers to older people

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.

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.

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.

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.

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 76-101years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naive 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.

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.