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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., This study has been supported by grants from Greta and Johan Kock Foundation [2014-231-401] and the Research Platform for Collaboration for Health at Kristianstad University [3/2014].

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.

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.

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.

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.

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.

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.

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

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 REPOR RR1-10.2196/13607

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. (Less)

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: 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.

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.

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.

Summary 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 10 year 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.

This paper explores focus group discussions of registered nurses in municipal palliative care for older people, using data collected by researchers with an interest in health sciences. The linguistically based discourse analyis builds on a combination of Bakhtinian notions of dialogicity, the Other and addressivity, the use of quotations, and also van Leeuwen’s framework for legitimation in discourse. The aim is to investigate strategies of addressing and legitimizing palliative care. Three types of narrative are discerned: the cautionary tale, fictionalization of professional experiences and the enactment of a fictive dialogue. The other professions involved (physicians, assistant nurses) are positioned as the Other as a means of legitimizing the perspectives of the registered nurses. As the patients and their next of kin are the objects of professional activities, the notion of the Third (connecting to the Other) is proposed. The objectification is a manifestation of commitment with routinized and professional distance to the patients.

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.

OBJECTIVE. This study explored factors related to changes in the time parents spent with their children with obesity and associated decreases in children’s body mass index (BMI) z-scores after an occupation-focused intervention. METHOD. Parents participated in a 1-yr occupation-focused intervention to promote healthy family lifestyles. Data on 40 parents of 22 children with obesity ages 4–6 yr were collected before and after intervention and analyzed using linear and multiple regression methods. RESULTS. Parents increased time spent with their children by an average of 91 min/day. Parents’ finances, perceived satisfaction in daily occupations, low BMI, and mastery at inclusion were associated with increased time spent with their children. Mothers’ subjective health and high mastery and fathers’ perceived occupational value and education explained 67% of the variance in children’s BMI z-scores. CONCLUSION. The results indicate important factors to consider in developing interventions that facilitate occupational engagement and health among children with obesity and their families.

The objective was to investigate definitions of frailty used in studies of multi-component health promotion and disease-preventive (HPDP) intervention programmes for community-dwelling frail elderly persons and to review the content, organisation and effects of HPDP interventions. A systematic review of 19 articles was made, and the International Classification of Functioning, Disability and Health (ICF) was used as a structural framework for the analysis. The result shows that a consensus was reached on including various aspects of impairments in body functions and structures as an integral part of the frailty concept, with the exception of one subgroup: mental/cognitive functions. Additionally, opinions varied quite consistently regarding aspects of activity limitations and participation restrictions, personal and environmental factors. Ten of the 14 HPDP programmes covered various intervention elements referring to all four ICF components. Eleven programmes involved registered personnel only, while a more divergent pattern was seen in the remaining organisational aspects of the interventions: length of interventions and location plus age segments, participatory approach and contextual information, as well as the theoretical foundation of the interventions. Measures of body functions and structures were significantly improved in 5 out of 17 (29%) targeted aspects. For activity and participation, 12 out of 32 (38%) targeted aspects were positively changed, while the score for environmental factors was 7 out of 22 (32%), and for personal factors 8 out of 22 (36%). Our review suggests that further research is needed to explore and disentangle the complex interrelationships between various interventions and outcomes.

Methodological issues are of central importance as research funders increasingly stipulate user participation in program/project calls. We will explore whether user involvement is always beneficial and highlight the challenges of involving users in research. We will discuss the ways in which the voices of older people in general as well as of vulnerable groups can be heard and explore the need to develop and test innovative approaches. More broadly, we will examine current methodological approaches available. Further, as they are predominantly comprised of qualitative methods, we will lay the claim for a broader arsenal of scientific methods, including qualitative and quantitative approaches, mixed methods, including state-of-the-art and newly developed methods. Finally, we will share ways forward, including interdisciplinary and cross-national collaborations, to develop more reliable and valid methodologies for the evaluation of research involving user participation. Ultimately, this will lead to the development of generalizable knowledge and cumulative knowledge building.

Many staff working in residential aged care facilities gain satisfaction from working with people with dementia, however, they also experience significant stress. High levels of stress among the staff can in turn affect the quality of the care provided to residents. There is thus a need for instruments to measure staff strain in the dementia-specific residential care environment. The aim of the study was to develop an instrument investigating strain among staff working in dementia care i.e. the “Strain in Dementia Care Scale”. The instrument was initially developed through experiences of strenuous aspects of work identified in six focus group discussions with 35 nurses in Australia, Sweden and the United Kingdom. A preliminary 64-item scale was in the next phase reduced to a 29-item scale after being distributed to 927 staff working in dementia care in Australia and Sweden. In the final phase, a confirmatory factor analysis was made after distributing the 29-item scale to a new sample of 346 staff in Sweden. The final 27-item scale resulted in a five-factor solution: Frustrated empathy; difficulties understanding and interpreting; balancing competing needs; balancing emotional involvement; and lack of recognition. The Strain in Dementia Scale can be used (a) as an outcome measure of intervention studies in residential care; (b) to help identify interventions needed, based on high scores on different factors, to improve staff well-being in residential facilities and, in turn, those they care for; and (c) to generally highlight the importance of improving issues related to staff strain.

Aging often bring about several losses, such as loss of bodily functions but also losses of significant others who pass away. Older people being in the last period in life are particularly vulnerable as they often live with complex symptoms and problems and are dependent on others. Existential loneliness, a deeper sense of loneliness, seems to occur in relation to threatening life events and losses, but there is still limited knowledge about frail old people’s experience of existential loneliness. The aim of the study was to illuminate the lived experience of existential loneliness as narrated by frail old people. The study had a qualitative descriptive design based on 21 interviews with persons 75 years and older receiving long-term care and service, using a phenomenological hermeneutical analysis. The interviews were rich of narratives about situations that was connected with a deep feeling of loneliness. The findings showed that existential loneliness meant Being trapped in the own body, Not being able to share, Being invisible, Lacking purpose and meaning and a Longing for serenity. The findings are important in order to highlight older people’s existential needs and to guide health professionals to discover and encounter existential loneliness among their patients.

The rationale for involving users in research has its origin in ideas of empowerment, with a striving to shift power in the research process from the researchers to the users. User oriented research showcases a plethora of conceptual and theoretical foundations. We will problematize the variety of terms being used, such as user-driven research, co-design, participatory design, patient and public involvement (PPI), transdisciplinary and collaborative research. Addressing the paucity of theoretical support in the literature we will relate to promising theoretical approaches emanating from implementation science and the participatory design paradigm. Research with user participation can include the entire research process, from definition and understanding of the research question to the communication and translation of the results. Referring to the WHO (2012) framework for knowledge translation in aging and health, we will conclude this presentation by outlining research priorities aiming to increase the understanding of user participation in research.

Loneliness and thoughts about existential aspects are common among older people and unmet needs to share their thoughts can lead to existential loneliness. Knowledge about how health care staff perceive existential loneliness in older people and what they do to meet their needs is scarce. The aim of the study was thus to explore health care staff’s perception of older persons’ existential loneliness. Ten focus group interviews were performed with staff (n=55) representing different professions, such as nursing aids, nurses, physicians, occupational therapists, physiotherapists, social counselors and social workers. Different care contexts were included to reach variation; home care, nursing homes, palliative care, primary care, hospital care and prehospital care. Data was analyzed using a qualitative content analysis. The results show that existential loneliness appears in various forms depending on the older person, their life experiences and the situation at hand and seems to be connected to issues about time and place. Staff perceived that existential loneliness emerged when physical disabilities became barriers, when they felt excluded by people in their vicinity or when they themselves excluded others from their life-world. Existential loneliness also emerged when they felt alienation, guilt or regret for situations in the past. Preparedness among staff to identify and deal with existential loneliness varied while the care environment seems to hinder or support their possibility to discover and encounter existential loneliness.

Aim: To validate and evaluate the psychometric properties of the ALPS-Neo, a new pain assessment scale created for the continuous evaluation of pain and stress in preterm and sick term infants. Methods: A unidimensional scale for continuous pain, Astrid Lindgren Children's Hospital Pain Scale (ALPS 1), was developed further to assess continuous pain and stress in infants treated in the neonatal intensive care unit (NICU). The pain scale includes observations of five behaviours. A manual was created, clarifying the scoring criteria. An internal and an external panel assessed face validity. Psychometric properties were evaluated in three different steps. Inter-rater reliability was estimated from video-based assessments (n = 625) using weighted kappa statistics (test I). Inter-rater reliability was further evaluated in test II (n = 125) and test III (n = 96) by real-time assessments using the intraclass correlation coefficient (ICC) and Cronbach's alpha. Results: The final inter-rater reliability (test III) was assessed as good with ICC 0.91 for the total score and 0.62-0.81 for the five items. Cronbach's alpha showed 0.95 for the total score. Conclusion: ALPS-Neo is a new assessment tool for optimising the management of pain and stress in newborn infants in the NICU. It has proved easy to implement and user-friendly, permitting fast, reliable observations with high inter-rater reliability.

A palliative care approach aims to integrate psychosocial and existential as well as relationship aspects in the care and is an approach that can be used in residential care. Nurse assistants are the ones who are closest to the residents but have limited prerequisites for working in accordance with the palliative care approach. We aimed to investigate the effects on nurse assistants' experiences of care provision and the caring climate of an intervention applying a palliative care approach in residential care.An intervention involving nurse assistants (n = 75) and their leaders (n = 9), in comparison with controls (n = 110), was evaluated using a questionnaire at three points in time.In the intervention group, positive effects were seen concerning the nurse assistants' reports of the care provision in that they focused more on the residents' stories about their lives and on communicating with the residents about what gave meaning to their lives. Also, negative effects were seen when the nurse assistants rated that the residents' needs for medical and nursing care had not been met at the facility directly after the intervention. No effects were seen concerning the caring climate or the prerequisites of providing more person-centred care.The intervention seemed to have encouraged the nurse assistants to focus on relationship aspects with the residents. So as not to jeopardise the NAs' well-being and to support NAs in keeping themselves involved in existential issues, their support most certainly needs to be continuous and ongoing. However, in spite of the leaders' involvement, the intervention was not sufficient for changing the organisational prerequisites for more person-centred care.

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.

Aim:The aim of the study was to illuminate older immigrants' experiences of moving to a residential care facility.Background:Increased immigration will lead to a future increase in the number of older immigrants in residential care. In order to adjust nursing care to their needs it is important to acquire knowledge of their situation.Methods:Semi-structured interviews with seven immigrants living in residential care in Sweden were analysed using a qualitative manifest content analysis.Findings:Older immigrants' experience of everyday life in residential care facilities was: Trying to adjust to relocation to residential care, Feeling alienated by communication difficulties, and Trying to stay connected by keeping ties to the origin and past, with internal variation seen as subcategories.Conclusion:Older immigrants, who move into residential care are vulnerable and experience a major transition as they move from a familiar social and cultural environment into a place mainly designed for older Swedes. There ...

The aim was to investigate job strain and stress of conscience among nurse assistants working in residential care and to explore associations with personal and work-related aspects and health complaints.It is important to investigate job strain and stress of conscience, both for the well-being of the nurse assistants themselves and for the impact on the quality of care they provide.Questionnaires measuring job strain, stress of conscience, personal and work-related aspects and health complaints were completed by NAs (n = 225). Comparisons of high and low levels of job strain and stress of conscience and multiple linear regression analyses were performed.Organisational and environmental support and low education levels were associated with low levels of job strain and stress of conscience. Personalised care provision and leadership were related to stress of conscience and the caring climate was related to job strain.There is a need for support from the managers and a supportive organisation for reducing nurse assistants work-related stress, which in turn can create a positive caring climate where the nurse assistants are able to provide high quality care.The managers' role is essential when designing supportive measures and implementing a value-system that can facilitate personalised care provision.

To explore care satisfaction in relation to place of living, health-related quality of life, functional dependency and health complaints among people 65 years or older, receiving public care and service. The concept public care and service concerns formal care from the municipality, including home help, home nursing care, rehabilitation and a special accommodation.To be able to provide care and service of high quality to older people, knowledge about factors influencing their experience of satisfaction with the care is essential.Cross-sectional, including comparison and correlation.One-hundred sixty-six people receiving public care and service from the municipality were interviewed regarding demography, functional ability, perceived health complaints and care. Health-related quality of life was measured with SF-12, and self-rated care satisfaction was measured with a questionnaire.Low self-rated care satisfaction was associated with dependency in Instrumental Activities of Daily Living, blindness, faeces incontinence and anxiety, while high self-rated care satisfaction was associated with dependency in Personal Activities of Daily Living. Those at home rated an overall higher care satisfaction and were more satisfied with care continuity and personal relations; they thought that the staff had more time and were more respectful and quiet, than the ratings by those in a special accommodation (equivalent to a nursing home).Care satisfaction and health-related quality of life among older people was more associated with functional impairment and health complaints than to whether care and service was received at home or in a special accommodation.An approach using intervention focused on functional ability and health complaints is important for development of improved care satisfaction for older people receiving public care and service.

Background: The palliative care approach was originally developed for hospice care and for persons with cancer diseases, but has gradually expanded to embrace other contexts and people of all ages ...

To examine independence in activities of daily living (ADL) at the 1- and 2-year follow-ups of the health-promoting study Elderly Persons in the Risk Zone.A randomized, three-armed, single-blind, and controlled study. A representative sample of 459 independent and community-dwelling older adults, 80 years and older, were included. A preventive home visit was compared with four weekly multiprofessional senior group meetings including a follow-up home visit.Analysis showed a significant difference in favor of the senior meetings in postponing dependence in ADL at the 1-year follow-up (odds ratio [OR] = 1.92, 95% confidence interval [CI] = 1.19-3.10) and also in reducing dependence in three (OR = 0.52, 95% CI = 0.31-0.86) and four or more ADL (OR = 0.40, 95% CI = 0.22-0.72) at the 2-year follow-up. A preventive home visit reduced dependence in two (OR = 0.40, 95% CI = 0.24-0.68) and three or more ADL (OR = 0.37, 95% CI = 0.17-0.80) after 1 year.A long-term evaluation of Elderly Persons in the Risk Zone showed that both senior meetings and a preventive home visit reduced the extent of dependence in ADL after 1 year. The senior meetings were superior to a preventive home visit since additional significant effects were seen after 2 years. To further enhance the long-term effects of the senior meetings and support the process of self-change in health behavior, it is suggested that booster sessions might be a good way of reinforcing the intervention.

Background. Nurse assistants working in residential care facilities need support to ensure that they provide high-quality care for the residents and support for relatives, from admission to bereav ...

The aim of this study was to describe the experiences of undergoing a presymptomatic genetic test for the hereditary and fatal Huntington’s disease, using a case study approach. The study was based on 18 interviews with a young woman and her husband from the decision to undergo the test, to receiving the results and trying to adapt to them, which were analysed using a life history approach. The findings show that the process of undergoing a presymptomatic test involves several closely connected ethical and medical questions, such as the reason for the test, the consequences of the test results and how health-care services can be developed to support people in this situation.

Background: While the work situation for nurse assistants in residential care is strenuous, they themselves often state that they are satisfied with their job. More knowledge is clearly needed of the interrelationship of variables associated with job satisfaction. This study aims to investigate job satisfaction and explore associated variables among nurse assistants working in residential care.Methods: A total of 225 respondents completed a questionnaire measuring general job satisfaction, satisfaction with nursing-care provision and measures concerning person-centered care, work climate, leadership, and health complaints. Job satisfaction was the outcome measure and comparisons were made among those reporting low, moderate, and high levels of job satisfaction; multiple regression analyses were used to explore associated variables.Results: The caring climate and personalized care provision were associated with general job satisfaction. High levels of satisfaction with nursing-care provision were also associated with the general work climate, organizational and environmental support, and leadership. Low job satisfaction was mainly associated with health complaints.Conclusions: Nurse assistants working in a positive work climate, caring climate, with a positive attitude to their leaders, who receive organizational and environmental support, provide person-centered care and experience a higher degree of job satisfaction. It seems essential, however, to include both general and context-specific measures when investigating job satisfaction in this field as they reveal different aspects of the nurse assistant's work situation.

Background. One key aspect of person-centredness is striving to understand both the patients' experiences and behaviours from their perspective. These aspects are precisely those that staff in dem ...

The aim of the study was to explore nursing students' experiences of aspects important for their learning process and their ability to handle the complexity of the nursing degree program. The study was longitudinal and qualitative based on interviews with nursing students, six women and two men aged 20-36, during their three years of education. In all, seven patterns were found embracing aspects of importance for the students' learning: Having a clear goal, being able to re-evaluate one's ideas, being acknowledged, when the abstract becomes tangible, using one's own experiences as a tool for learning, hovering between closeness and distance regarding one's future profession and handling theory and practice in relation to one another. The results show the importance of providing clinical courses, strongly connected to the theoretical parts of the program and to use reflection and experience-based learning in the nursing program.

There is a paucity of research literature concerning frailty in older persons from the health care professionals’ perspective. Consequently, the purpose of this study was to elucidate health care professionals’ view of frailty in older persons. An explorative, qualitative design was selected and four focus groups comprising 21 health care professionals were conducted, audiotaped, transcribed verbatim, and analyzed. Frailty was found to consist of seven dimensions: “being bodily weak and ill,” “being negatively influenced by personal qualities,” “lacking balance in everyday activities,” “being dependent in everyday life,” “not being considered important,” “being hindered by the physical milieu and defective community service,” and “having an inadequate social network.” The results showed that health care professionals’ view of frailty in older persons differed from the current state of knowledge on frailty. This implies that the seven dimensions found to constitute frailty could contribute to a more comprehensive understanding of the concept.

Little is known about the dyadic experience over time of people with dementia and their next of kin. The aim of this study was to investigate the state of mind of people with dementia, their next of kin's experience of burden and satisfaction, and factors associated with these experiences over a 3-year period. The sample consisted of 32 people with dementia living at home with family caregivers in the south of Sweden. Data were collected during the period 2004-2007 and consisted of patients self reports (GDS), dementia nurse assessment (MMSE, Berger and ADL) and next-of-kin assessment (patient's state of mind and care provision). Data also consisted of next-of-kin's self reports concerning health, burden and satisfaction. The result showed that patients' state of mind was mainly positive at baseline but a deterioration was seen over time in the patient's mood and cognitive functioning together with an increase in ADL-dependency and suspected depression. Dependency in personal ADL entailed a higher risk of being in a negative state of mind. For next of kin the experience of burden increased while satisfaction decreased over the 3 years. The inter-relationship between the patients' mood and the caregiver's satisfaction and burden seems to get stronger over time. At baseline caregiver burden was mainly related to the next of kins' general health and to patient behaviours that were difficult to handle. During the progression of the disease caregiver satisfaction becomes increasingly related to patient state of mind and dependency. There is, however, a need for more research focusing on the specific inter-relational aspects as previous studies have mainly focused on either the situation for the person with dementia or on the caregiver.

In order to increase the understanding of how students assimilate the knowledge they need to carry out their professional duties, knowledge about the experience of the nursing education in the light of the first year of employment is important. The aim of this study was to describe nurses' views of their education, one year after their graduation. Interviews with eight nurses, aged 24 to 40 years, were analysed using manifest qualitative content analysis. The results show that, when viewing their education in the rear-view mirror, they emphasised the importance of the applied courses but had started to acknowledge the importance of training in scientific methods, which during their education was seen as less important. They also stated that their training in medical science had been sufficient, although during their education they expressed doubts about whether this level of knowledge would be enough. The nurses also realised that knowledge concerning the subject of nursing science afforded them both opportunities and the potential possibilities to influence nursing care provision. The study indicates that nursing education gives the students the tools they need to perform their assignments as registered nurses, even if clinical experience is required to internalise and consolidate the knowledge.

Background: The International Psychogeriatric Association Task Force on Mental Health Services in Long-Term Care Facilities aims to support and strengthen mental health services in the long-term care sector. The purpose of this paper is to identify broad principles that may underpin the drive towards meeting the mental health needs of residents of long-term care facilities and their families, as well as to enhance the overall delivery of residential care services.Methods: Principles of good care are extrapolated from an analysis of international consensus documents and existing guidelines and discussed in relation to the research and practice literature.Results: Although the attention to principles is limited, this review reveals an emerging consensus that: (1) residential care should be situated within a continuum of services which are accessible on the basis of need; (2) there should be an explicit focus on quality of care in long-term care facilities; and (3) quality of life for the residents of these facilities should be a primary objective. We take a broad perspective on the challenges associated with actualizing each of these principles, taking into consideration key issues for families, facilities, systems and societies.Conclusions: Recommendations for practice, policy and advocacy to establish an internationally endorsed principles-based framework for the evolution and development of good mental health care within long-term care facilities are provided.

Objective:The aim of the study was to investigate the experience of being next of kin to an older person in the last phase of life as narrated after the older person's death.Method:Qualitative interviews were performed with the next of kin (n = 17) to people aged 75 years and older who had recently died and had received help and/or care from the municipality in the last phase of life. Eleven women and six men participated, of whom seven were spouses, nine were children, and one was a grandchild. The interviews were analysed using qualitative content analysis.Results:The experience of the next of kin could be understood as being a devoted companion during the transition toward the inevitable end, embracing the categories of living in the shadow of death; focusing on the needs of the dying person, making adjustments to everyday life; feeling the major responsibility; struggling with the health and social care system; and gaining strength from support.Significance of results:Being next of kin to an old person at the end of life means being a devoted companion during the transition toward the inevitable end, including the feeling of bearing the major responsibility and the need to be acknowledged by professionals. This study points to the importance of having access to professional care when it is needed, to complement and support the next of kin when his or her own resources and strength falter. This also includes support to enable the next of kin to remain involved in the care of his or her loved ones, thereby fulfilling their own wishes.