Existentiell ensamhet hos sköra äldre personer: äldre personers upplevelser samt dokumentation i patientjournalen

Abstract

The overall aim of this thesis was to illuminate the meanings of existential loneliness(EL) and describe how it was eased, as narrated by frail older people, as well as toexamine existential aspects documented in patient records in specialised palliative care.Two of the constituent studies of this thesis were qualitative with an explorative anddescriptive design (i.e., studies I and II), and two studies were based on a retrospectivepatient record review, of which one was quantitative with an exploratory design (StudyIII) and the other was qualitative with a descriptive design (Study IV). The datacollection for studies I and II was based on individual interviews with frail older people75 or more years old. Studies III and IV were based on a randomly selected sample ofpatient records of frail older people who died in specialised palliative care during 2017.The data were collected using a pilot-tested review template to identify aspects of thedocumentation relating to the aims of the studies.The findings of Study I indicated that EL was a negative experience. Four themeswere identified related to meanings of EL: being trapped in a frail and deterioratingbody, being met with indifference, having nobody to share life with, and lacking purposeand meaning. The first theme was considered an overarching theme due to its closeinterrelatedness with the other three themes. The comprehensive understanding of ELamong frail older people was ‘being disconnected from life’, an experience of at leastmomentary abandonment, being left to one’s fate, and living a meaningless life. Study IIshowed that existential loneliness was eased when being acknowledged by others, beingthe focus of others’ concern, encountering intimacy, and having meaningful exchangesof thoughts and feelings. It was further eased when the participants could bracketnegative thoughts and feelings, that is, when they could adjust and accept the presentsituation, view life in the ‘rear-view mirror’, be in contact with spiritual dimensions, andwithdraw and distract themselves. Existential loneliness could be either in the forefront(i.e., feelings of ill-being) (Study I) or in the background (i.e., feelings of well-being)(Study II). The findings of Study III indicated that performed interventions were the14most common subject of documented clinical notes, mostly related to pharmacologicalinterventions. Pain was the most common documented problem, followed by circulatoryproblems, nutrition problems, and anxiety. Clinical notes concerning wishes and wellbeing-related details were documented, but not frequently. Overall symptom assessmenttools, especially multi-dimensional tools, were used to a small extent. More people whoreceived care in palliative in-patient wards died alone than did people who received carein their own homes. Study IV was based on notes extracted from 84 patient records.The results indicated that documented existential aspects had both negative and positiveconnotations and were related to the patients’ loss of freedom and self-determination,loneliness and community, anxiety and inner peace, and despair and hope. The notesconcerning existential aspects were, however, not recorded in a structured way and nocare plans relating to existential aspects were found.According to the studies, both ill-being and well-being were evident, and the livedbody occupied a central position in all studies. The frail body increased the patients’vulnerability and limited their living space. Meaningful activities and meaningfulcommunity and exchange with others eased the existential loneliness. Existentialloneliness remains invisible to others as long as nobody talks about it, and it remainsinvisible in the documentation as long as it is not documented in a structured way.This thesis demonstrates the importance of making existential loneliness and existentialaspects visible in encounters with frail older people and in the clinical documentation.