| 1. |
- Österlind, Jane, 1959-
(författare)
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När livsrummet krymper : vård och omsorg av äldre personer i livets slutskede
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- This research focused on the life situation of older people, who had moved to a nursing home at the end of life, from the perspectives of the older people themselves, care managers and nursing staff. The thesis is based on an analysis of 446 care manager assessments and decisions, interviews with seven care managers, six older people and 28 nursing staff. The main fi ndings are: (I); that there was a statistically signifi cantly shorter waiting time for a move to a nursing home for older people who were in hospital compared to those who were living in their own home at the time of the decision. Seventy percent of the decisions made by care managers’ concerned women. The waiting period for men was fi ve days shorter compared to women. (II); that the care managers’ descriptions revealed that their assessments of the needs and wishes of the older people were infl uenced by whether or not it was clear that the older person had only a limited time left to live. The care managers’ way of reasoning has been conceptualised as two approaches, the medical and the natural path to death, where the former was characterised as fl exible and collaborative, whereas the latter was governed to a greater extent by a “wait and see attitude”. (III); that the older people’s experiences of living in a nursing home have been conceptualised into three themes: feeling like a stranger in an unfamiliar culture, being excluded from life, and living while waiting for death. The latter involved a deep insight that life would soon come to an end; a fact the staff appeared to take into account to only a minor extent. (IV); that dying and death was characterised by a discourse of silence, with tension between avoidance of and a confrontation with death. Staff members who expressed a fear of death held it at a distance by concentrating on practical tasks and avoiding close contact with older people who were dying. The thesis highlights the fact that the dying and death of older persons was characterised by a discourse of silence and several transitions. Death was not a topic that the staff members or older people generally talked about, and care in the fi nal phase of life was not actively or explicitly planned. In terms of access to a nursing home bed, only older people with an extensive need for care obtained such a place. These fi ndings imply that all older people can be said to be in need of palliative care. The older people in our study were in a liminal phase, and waiting for death. Feelings of social and existential loneliness and that their living space was shrinking were evident. It was also clear that the older people and staff members inhabit the same place but appear to be in two different sub-cultures, where the norms and values that guided the staff members’ attitudes were dominant. Keywords: transition, older people, end of life care, palliative care, nursing home, caring, care manager and staff
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| 2. |
- Eckerblad, Jeanette, 1966-
(författare)
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Symptom burden among people with chronic disease
- 2015
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Chronic diseases tend to increase with old age. Older people with chronic disease are commonly suffering from conditions which produce a multiplicity of symptoms and a decreased health-related quality of life. Nurses have a responsibility to prevent, ease or delay a negative outcome through symptom management, or assist in achieving an acceptable level of symptom relief.Aim: The overall aim of the thesis was to describe different aspects of symptom burden from the perspective of community-dwelling people with chronic disease.Methods: This thesis is based upon four papers that used both quantitative and qualitative data to describe different aspects of symptom burden, experienced by people with chronic diseases. Paper (I) is a cross-sectional study with 91 participants diagnosed with chronic obstructive pulmonary disease. Papers (II and IV) are based upon secondary outcome data from a randomized controlled trial with 382 community-dwelling older people with multimorbidity. Paper (II) is a cross-sectional study and Paper (IV) has a descriptive and an explorative design reporting on the trajectory of symptom prevalence and symptom burden. Paper (III) is a qualitative study with participants from the AGe-FIT.Results: Among people diagnosed with COPD the most prevalent symptoms with the highest symptom burden scores were shortness of breath, dry mouth, cough, sleep problems, and lack of energy, with just a few differences between participants with moderate and severe airflow limitation (I). For older people with multimorbidity, pain was the symptom with the highest prevalence and burden. Other highly prevalent symptoms were lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score (II). The symptoms experienced by the older people were persistent and the symptom burden remained high over time (IV). The experience of living with a high symptom burden was described as an endless struggle. The analysis revealed an overall theme, “To adjust and endure” and three sub-themes, “to feel inadequate and limited”, “to feel dependent”, and “to feel dejected” (III).Conclusions: The results of this thesis indicate the importance of early symptom identification. People with chronic diseases have an unmet need for optimized treatment that focuses on the total symptom burden, and not only disease specific symptoms. A large proportion of older people with multimorbidity suffer a high and persistent symptom burden, and the prevalence and trajectory of pain are high. Older people sometimes think their high age is the reason they experience a diversity of symptoms, and they do not always communicate these to their health-care provider.
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| 3. |
- Ericsson, Iréne
(författare)
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Välbefinnande och demens : Aspekter på välbefinnande hos äldre personer med måttlig till svår demens
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Personer som lever med demenssjukdom såväl som mentalt friska människor behöver uppleva välbefinnande. Ett viktigt mål i vården och omsorgen av personer med demens är därför att hitta vägar för att försöka främja välbefinnande hos personen. Avhandlingens övergripande syfte varatt utveckla kunskap om aspekter av betydelse för att äldre personer med måttlig till svår demens ska uppleva välbefinnande. Avhandlingen baseras på empiriskt material från fyra delstudier. Den första delstudien, I(etnografi) genererade fältanteckningar från 31 observationstillfällen samt nio kvalitativa intervjuer med vårdgivare, så kallade kontaktmän till personen med demens. Delstudie II(testutveckling/tvärsnittsstudie) utgjordes av 336 testprotokoll som bearbetades statistiskt. Materialet i delstudie III (reformulerad grundad teori) innefattade 18 kvalitativa intervjuer med personer med demens samt 18 observationsprotokoll från observation av icke-verbalt språk. Den sista delstudien (IV) (konstruktivistisk grundad teori) bestod av fältanteckningar från 24 videoinspelningar av Egentids-situationer och 24 kvalitativa intervjuer med personer med demens samt åtta kvalitativa intervjuer med vårdgivare. Resultatet från avhandlingens studier visar att de kognitivt friska personerna som finns i personens närhet har en avgörande betydelse för upplevelsen av välbefinnande hos personer med måttlig till svår demens. För att interaktion ska vara önskvärd och ge välbefinnande måste den mentalt friska parten ha kunskap och insikt om att det finns en större medvetenhet hos personen med måttlig till svår demens än vad det omedelbara intrycket av förmågor ger. Om denna insikt saknas finns risk att interaktionen kan leda till kränkning i stället för välbefinnande. Det är förmodligen av betydelse att ha kunskap om och försöka fånga personens kvarvarande förmågor istället för att fokusera på brister. Kunskap om kvarvarande förmågor och till exempel överinlärda förmågor som fångas i anpassade test kan bidra till en mer positiv syn på personen och innebära att kvarvarande förmågor bättre tas tillvara, vilket kan bidra till välbefinnande. Personen med måttlig till svår demens kan kommunicera ett välbefinnande men det kräver lyssnarens förmåga och förmåga att tolka. Det kan också kräva en del praktiska ansträngningar med hänsyn till personens kognitiva nedsättningar som till exempel hjälpmedel i form av bilder och ting. Förmodligen ger interaktion som leder till en relation alltid en upplevelse av välbefinnande. Tid är en avgörande faktor för att upprätta relationer som ger välbefinnande hos personer med måttlig till svår demens. Det är därför viktigt att i vården avsätta tillräcklig tid, som vid till exempel Egentid, för att upprätta relationer och därigenom främja välbefinnande.
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