ALS är en förkortning av Amyotrofisk lateral skleros. Nervceller som styr kroppensmuskulatur förtvinas och leder till förlamning. Till slut påverkas andningsmuskulaturen och man får svårigheter med andningen, vilket till sist leder till döden. Sjukdomen delas in i grupper och det skiljer sig åt i symptom och aggressivitet dock är utgången densamma. Överlevnaden är vanligtvis 3-5 år. Det bedrivs mycket medicinsk forskning men än så länge har man inte hittat botemedel. Orsaken är oklar men det finns vissa teorier. Behandlingen går ut på att lindra symtom och bromsa sjukdomförloppet. Syftet med denna studie är att belysa upplevelsen att leva med ALS.  Därför gjordes en litteraturstudie ur ett vårdvetenskapligt perspektiv, utifrån nio forskningsartiklar. Sökningar har gjorts i databaserna Cinahl, PubMed och Medline.I analysen framkom två teman: Förändrad livsvärld och Välbefinnande. Under Förändrad  livsvärd  framkommer  tre  underteman:  Lidande,  Skuld  och  skam  samt Vården av en anhörig. Under Välbefinnande hittades två underteman: Finna mening i livet och Konsten att leva i nuet. Studien visar att ALS skapar mycket lidande och existentiella funderingar både för patient och anhöriga. Den visar också att det är de anhöriga som står för den mesta vården och tar ett stort ansvar för patienten. Mitt i allt lidande kan man trots allt finna glädje och välbefinnande, vilket familj och vänner bidrar till.

Bakgrund: Palliativ vård syftar till att lindra symtom vid livshotande sjukdom och innefattar en helhetsvård av patienten och dess familj samt en tydlig vårdfilosofi. Då arbetet rymmer en hög komplexitet och sjuksköterskan utsätts för emotionell påfrestning i mötet med sorg och död kan motivationen att stanna kvar i yrket komma att ifrågasättas.Syfte: Syftet är att beskriva sjuksköterskors upplevelser och hantering av svårigheter inom palliativ vård. Metod: En litteraturöversikt med analys av tio vetenskapliga artiklar har gjorts. Utifrån detta har två teman, upplevelser av svårigheter vid vård i livets slutskede samt hantering av svårigheter vid vård i livets slutskede framträtt med tre respektive fyra åtföljande kategorier.Resultat: Svårigheter blev framträdande i möten med patientlidande, död och sorg samt i anslutning till gränssättande. Meningsskapande var ett starkt motiv i sjuksköterskors val att stanna inom yrket och hantera de svårigheter som uppstod. Ett stödjande team och tidigare erfarenheter underlättade i arbetet med döende människor där de ansåg emotionell balans vara viktig att finna.Diskussion: Svårigheter och dess hantering är beroende av varandra. Meningsskapande bildar ett sammanhang genom ökad förståelse för svårigheter och går att härleda till KASAM komponenten begriplighet. Resurser för att möjliggöra meningsskapande bidrog med hanterbarhet. Det finns anledning att betrakta modellen 6S som ett redskap för sjuksköterskor i hanteringen av svårigheter inom vård i livets slut, då säkerställandet av en god död för patienten även ökar möjligheten till sjuksköterskors tillfredställelse i arbetet. / Background: The aim of palliative care is to alleviate symptoms that occur with life-threatening disease and involves a holistic care of the patient and family and a clear philosophy of care. As the work holds a high complexity and the nurse is exposed to emotional strain in the meeting with bereavement and death, the motivation to stay in the profession can be compromised.Aim: The aim of this study is to describe nurse’s experiences and management of difficulties in palliative care. Method: A literature overview containing an analysis of ten scientific articles has been done. Out of this two head themes emerged, experiences of difficulties in end of life care and managing difficulties in end of life care. Three and four subcategories came out of the two head themes.Result: Difficulties were prominent in the meeting with patient suffering, death and bereavement and in accession to limit setting. Finding meaning where a strong motive to nurses choice to stay in the profession and managing difficulties that occurred. A supportive team and past experiences facilitated the work with dying people where finding an emotional balance were important.Discussion: Difficulties and its management is interdependent. Finding meaning create coherence through increased understanding towards difficulties and is possible to trace to the component comprehensibility in Sense Of Coherence (SOC). The resources to enable finding meaning contributed to manageability. There is reason to consider the model of 6S as a tool for nurses in the management of difficulties in end of life care, since ensuring of a good death increases the possibility of work satisfaction for the nurses.

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs.

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs.

The course of endstage renal disease (ESRD) and receiving hemodialysis (HD) treatment is complex and filled with uncertainty. Part of this illness experience includes making end-of-life (EOL) care decisions. Many families are unprepared to make such decisions. Advance care planning (ACP) creates an excellent context for laying the groundwork for these emotionally charged conversations. Hemodialysis patients, their families and healthcare providers (HCPs) are in a unique position to begin the ACP process early in the illness trajectory, revisiting it when the patient’s health status, prognosis and treatment modality changes. To date, little research has focused directly on how families experience ACP conversations in the context of ESRD or HD. The purpose of this study was to explore family members’ experiences of participating in a facilitated ACP conversation with the HD patient. This approach recognizes and privileges the family’s role in the illness trajectory of ESRD and validates that they too are HCPs’ clients. Five families, consisting of the HD patient and one family member, who went through the ACP process were interviewed along with an ACP facilitator from the nephrology program. This focused ethnographic study applied the theoretical perspective of postmodernist critical theory to derive and analyze data from in-depth semi-structured interviews. Findings revealed a detailed description of the ACP process that included timing, readiness to acknowledge the potentiality of death, facing mortality, and finding meaning in the illness experience. As families started to deconstruct their experiences, they shared stories of communication breakdown, highlighting the complexities of their relationships with HCPs. Understanding the factors that potentially contribute to HD patients’, their families’ and the renal staff’s discomfort with death were analyzed. The study findings provide important direction for HCPs about how families make ACP decisions, how they perceive the ACP process, and what they identify as their EOL care needs and wishes. Failure to implement ACP as part of an EOL care program means that death will continue to be denied and clients’ EOL care needs will remain un-addressed. In order for ACP to be effective on HD units, sustainable resources are essential for patients, their families and HCPs. / Applied Science, Faculty of / Nursing, School of / Graduate

(in English): The thesis focuses on the quality of life of carers of people with dementia being cared for at home. The theoretical section describes the concept of quality of life in general terms, but also considers carers accounts of their own personal experience. This section then outlines the various stages of dementia and how they impact the quality of life of caregivers. To complete the picture, this is followed by an assessment of care burden but also the various positive aspects arising from caring for dementia patients. By conducting semi-structured interviews, this work aims to investigate how excarers assess and value their experience of caring and whether, either while they were caring or retrospectively, they were aware of any positive aspects of caring for dementia patients and if so, specify what they were and if caregivers found personal meaning in their caregiving experience. Hence, the core area of interest is whether positive aspects of caregiving, finding meaning and cognitive restructuring could form the basis of a successful intervention, which may positively impact quality of life of current caregivers of dementia patients. While excarers mentioned numerous positive aspects associated with caregiving, some also referred to the meaning that they have found through caregiving....