Adolescents' Experiences of Existential Loneliness Regarding Receiving and Providing Support.

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.

Ethical challenges in residential care facilities during COVID-19: Leaders' perspective.

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.

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.

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.

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 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 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

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.

Job strain and stress of conscience among nurse assistants working in residential care.

AIM: 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. BACKGROUND: 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. METHOD: 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. RESULT: 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. CONCLUSION: 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. IMPLICATIONS FOR NURSING MANAGEMENT: The managers' role is essential when designing supportive measures and implementing a value-system that can facilitate personalised care provision.

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.

Development and psychometric properties of the Swedish ALPS-Neo pain and stress assessment scale for newborn infants.

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.

Applying a palliative care approach in residential care: effects on nurse assistants' experiences of care provision and caring climate.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

Effect of an occupation-focused family intervention on change in parents' time use and children's body mass index.

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.

Changes in parents' time use and its relationship to child obesity.

OBJECTIVE: The aim was to explore any change in parents' time use together with their children, changes in their perceived occupational value, and its relationship to children's body mass index (BMI) over the course of a one-year occupation-focused family intervention. METHOD: The study sample consisted of participants in one arm of a randomized controlled trial, involving mothers and fathers (n = 30) of 17 children aged 4-6 years who were considered obese. Data were collected by time-geographical diaries during the intervention and by measuring the parents' occupational value and the children's BMI before and after the intervention. RESULTS: At the end of the intervention, an increase was shown in the amount of time parents spent together with their children during weekdays (p = .042) and the parents perceived occupational value (p = .013). Children's BMI z-score changed with -0.11 units. CONCLUSION: Collaboration with parents may be useful in interventions aiming at facilitating a normal weight development among children.

Care satisfaction among older people receiving public care and service at home or in special accommodation.

AIMS AND OBJECTIVES: 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. BACKGROUND: 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. DESIGN: Cross-sectional, including comparison and correlation. METHODS: 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. RESULTS: 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). CONCLUSIONS: 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. RELEVANCE TO CLINICAL PRACTICE: 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.

In search of legitimacy--registered nurses' experience of providing palliative care in a municipal context.

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, with various life-threatening diseases. The palliative care concept thus also applies to older people and the context of municipal care, where Registered Nurses (RNs) hold key care provision positions. The municipal context is not, however, focused primarily on advanced nursing care, and it is important to highlight RNs' prerequisites for care provision. AIM: The study's aim was to describe RNs' experience of providing palliative care for older people in a municipal context. Data were collected through focus group discussions with 20 RNs from four different municipalities in southern Sweden and were analysed using conventional content analysis. FINDINGS: The results showed that the nurses experienced that it was they who cushioned the effects of unclear responsibilities between different organizations, but had limited legitimacy in the municipal context and in relation to other care providers. The results also showed that nurses lacked proper support and prerequisites for providing high-quality palliative care to older dying patients. CONCLUSION: The results pinpoint the importance of increased acknowledgement of nurses' knowledge and skills and a critical view on the effects of moving towards an organization composed of different consultants, which can lead to even more unclear responsibility for nursing care provision.

Ethical aspects of undergoing a predictive genetic testing for Huntington's disease.

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.

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.

Job satisfaction and associated variables among nurse assistants working in residential care.

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.