The aim of this thesis was to explore existential loneliness from the perspective of significant others, to contrast their perceptions with frail older people’s experiences and to describe significant others’ and family care advisors’ views on existential support. This thesis is part of a larger research project about existential loneliness among frail older people, the LONE study. The thesis embraces three qualitative and one quantitative study. A total of 29 significant others, 15 frail older people and 120 family care advisors participated in the studies. The significant others were husbands, wives, daughters, sons, other relatives and friends to frail older people. The concept ‘frail older people’ was defined as older persons (≥ 75 years old) dependent on long-term health- or social care. The qualitative studies were based on multistage focus-group interviews (study I) and individual interviews (studies II and III). The quantitative study (IV) had a cross-sectional design and was based on a questionnaire specifically developed for the current study. Different methods to analyse data were used; hermeneutics (study I), content analysis (study II), a case study with thematic analysis (study III) and descriptive statistics (study IV). Findings from the four studies show that existential loneliness emerges when: 1) Longing for, but also striving for, a deeper feeling of connectedness, 2) Being in, but also enduring, an unwanted separation, and 3) Not finding, but still trying to recreate meaning. This thesis also shows that existential loneliness is often experienced in so-called limit situations in life and arises in difficult choices related to close relationships, in connection with experiences of meaninglessness and in the absence of connection to something or someone. The results show that existential loneliness emerges in the process of balancing between what was and what is to come in the unknown future. Significant others navigate themselves, and sometimes together with the older person, through an unfamiliar existence that makes them feel ambivalent about the de-cisions they have previously made and the decisions they need to make in the future, while also doubting the meaning in their current situation. Existential support should mainly focus on transition phases and on relational aspects. Person-centredness can be a way to make the existential needs of significant others and older people visible and to provide support based on their needs.

Forskningsresultat når inte alltid ut i vården till patienter och kliniskt verksam personal. Detta kan leda till att den vetenskapliga grund, som vården enligt svensk lagstiftning ska vila på, inte erbjuds. Anledningen till att vetenskapligt belagd kunskap inte når ut kan vara til lexempel avsaknad av kunskap om hur forskningsresultat sprids och om hur resultat kan omsättas till den egna verksamheten. Ett omfattande forskningsfält inom omvårdnad rör samtal, kommunikation och reflektion kopplat till relationen mellan vårdpersonal och patient. Reflektion bör ses som en central företeelse inom vården dels för att förstå patienten dels för att förändring skall komma till stånd. Reflektioner inom ramen för ett aktionsforskningsprojekt torde leda till förändringar i relation till vårdpersonals förståelse och attityder till patienten. Syftet med studien var att undersöka om förändringar sker i personals syn på sig själv och på patienten i samband med att de deltog i ett aktionsforskningsbaseratutvecklingsarbete. Fokus för utvecklingsarbetet var bedömning av patienters smärta. Studien är kvalitativ. Data har inhämtats i samband med fokusgruppsamtal, transkriberats och analyserats utifrån en hermeneutisk analysmetod. Följande tre huvudteman framkom vid analysarbetet; patienten blir en person; professionell identitet blir tydligare; teamanda förstärks. Innebörderna i dessa tre teman tolkas i relation till teorier om personcentrerad vård och transition. Deltagarbaserad aktionsforskning kan vara ett sätt att öka användning av forskning och omsätta den nya kunskapen till egen handling. I studien gav deltagarna uttryck för att deras arbete resulterade i ett förändrat arbete med smärta och smärtbedömning mot en patientnärmre vård.

Aims and objectives

To investigate changes over time in an interdisciplinary group that was engaged in development work regarding pain and pain assessment.

Background

The outcomes of nursing research do not always find their way to the daily care of patients. This is evident within, for instance, physical rehabilitation, where relieving patients' pain is a major challenge. To gain new understanding, develop and change, registered nurses have a great part in engaging their staff.

Design

A qualitative study using a participatory action research approach was used, and a hermeneutic analysis was conducted.

Methods

A group of three registered nurses, two assistant nurses and a physiotherapist took part in focus group sessions. This group was followed with seven repeated sessions during a period of five months from January 2010 until June 2010. A hermeneutic analysis was used.

Results

The participants changed their attitudes towards the patient in pain, their own caring role and the team's role towards a more person-centred care.

Conclusions

Participation and reflection were key aspects as means to transfer knowledge into action and establish change. The participants came to the sessions, shared actively their experiences and expressed pride in the work they accomplished. This can be seen as an expression of a need to share and a joy to be working together in a person-oriented development area. In addition, the approach seemed to contribute to increased job satisfaction.

Relevance to clinical practice

The participants expressed that their work resulted in a changed approach to pain and pain assessment in their daily practice at the ward. The participants were actively engaged in enhancing their work with pain and pain assessment in their own daily practice and in implementing research-based knowledge.

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

BACKGROUND: 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.

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

Purpose: Spouses are in a vulnerable situation when caring for a frail partner late in life. Exploring their existential loneliness can be a way to understand more about their existential needs.Method: A hermeneutic approach was used. Multistage focus group interviews were conducted with two groups consisting of five spouses, respectively, who met three times each. To work with the text, an approach was adapted where quotations are converted into poems in a linguistic manner.Results: Existential loneliness can be understood as the following: 1) being in a transition from us to merely me, 2) being forced to make decisions and feeling excluded, 3) navigating in an unfamiliar situation and questioning oneself, and 4) longing for togetherness but lacking the energy to encounter other people. The main interpretation is that existential loneliness emerges when one is in moments of inner struggle, when one is forced to make impossible choices, when one is approaching and is in limit situations, and when one is experiencing the endless loss of the other.Conclusion: For health care professionals to achieve a holistic picture, person-centeredness can be a way to make the spouses' existential needs visible and to provide support based on their needs.