| 1. |
- Hedman, Ragnhild, 1962-
(författare)
-
Striving to be able and included : Expressions of sense of self in people with Alzheimer's disease
- 2014
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- According to research applying a social constructionist perspective, the sense of self is not lost in people with Alzheimer’s disease (AD). It is, however, greatly influenced by the symptoms and by how they are treated by other people. Without support, it is difficult to preserve a positive sense of self, when living with progressing cognitive impairments. The stigma associated with cognitive impairment also threatens their sense of self. Harré’s social constructionist theories of self and positioning have been used to study how people with AD express their sense of self. As there is a need to expand the previous research by involving additional participants and research contexts, the aim of the present thesis was to describe, in accordance with Harré’s theories of self and positioning, how people with AD expressed their sense of self in personal interviews and in support groups with other people with AD. The research consists of four substudies (I–IV), and has a qualitative, descriptive, and theory-testing approach. Thirteen people with mild and moderate AD were included, 11 of whom had the early onset form of the disease. Two support groups were formed, led by facilitators who supported the communication and the participants’ expressions of self. Each group met 10 times during an eight-month period. Topics were not predetermined, and introduced by both facilitators and participants. Semistructured interviews were conducted before the groups started and after they ended. The interviews and support group conversations were audio-recoded and analysed with qualitative content analysis, guided by Harré’s theories. In substudy I, the initial interviews were deductively analysed. The findings showed that Self 1 (the sense of being a singular, embodied person) was expressed by the participants without difficulties. Self 2 (the perception of one’s personal attributes and life history) was expressed as feeling mainly the same person. While some abilities had been lost, other had been developed. Self 3 (the socially constructed self) was described as mostly supported, but sometimes threatened in interactions with other people (I). In substudy II, support group conversations were analysed abductively with respect to expressions of Self 2. It was found that participants expressed Self 2 in terms of agency and communion, and a lack of agency and communion (II).In substudy III, a secondary analysis of the data from substudy II was performed inductively with the aim of describing how Self 3 was constructed in the interaction of the support group. Five first-order positions, generating lively interaction, were described: the project manager, the storyteller, the moral agent, the person burdened with AD, and the coping person (III). In substudy IV, all the collected data were reanalysed inductively, focusing on how participants expressed the experience of being research participants. Three themes were constructed: contributing to an important cause, gaining from participating, and experiencing risks and drawbacks (IV). In conclusion, it was found that participants constructed positive social selves through the support from each other, the facilitator, and researchers in the support group (III), and as research participants (IV). Agency and communion were central to Self 2, and decreased with the progression of AD (II). In spite of change, participants perceived themselves as basically the same people, with a potential to learn and develop as persons (I).
|
|
| 2. |
- Larsson, Susanne
(författare)
-
Självbestämmande i LSS : En villkorad rättighet för personer med intellektuell funktionsnedsättning
- 2021
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Persons with moderate to more severe intellectual disabilities have a legal right to exercise self-determination, and a right to receive individually tailored support to enable them to live independently. However, these rights are not always realised in practice. Taking the difficulties that the functional impairments imply as a starting point, the aim of this thesis is to critically review and accrue increased knowledge about what conditions for self-determination persons with moderate to more severe intellectual disabilities are given within the context of support services offered, according to the Swedish Disability Act. The study is a multiple case study, based on analyses of so-called implementation plans and notes from observations and interviews (with staff), all gathered within the same six units:three group homes and three daily activity units. By conducting thematic analyses and using concepts from Nordenfeldt’s action theory, as well as theory about positioning, three overarching themes were developed: staff’s supportive methods and approaches, staff’s non-supportive methods and approaches, and staff’s methods and approaches that are both supportive and not when it comes to opportunities for self-determination. For example, staff views on the persons’self-determination as being adequate are interpreted as supportive. As a contrast, the fact that enhanced support is rarely used and, if used, rarely to a degree that promotes the person’s own initiative, is interpreted as non-supportive, and the implementation plans are interpreted as both supportive and non-supportive. Fundamentally, the study shows that the practical possibilities to exercise self determinationare limited for persons with moderate to severe intellectual disabilities by certain aspects of staff methods and approaches, and by the organisation of the units where the support is conducted. Further research is suggested on how to enable practise, staff methods and approaches that, to a higher degree, consider the persons themselves when planning and conducting their support, on the organisational preconditions, the implementation plans included, for complying with the principles and political goals of a person’s self determination and on the impact of staff knowledge, not least when it comes to enhanced support and communication devices. Finally, the character of conducting support and what this means for the methods and approaches, should be investigated further.
|
|
| 3. |
- Eckerblad, Jeanette, 1966-
(författare)
-
Symptom burden among people with chronic disease
- 2015
-
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.
|
|
| 4. |
- Ericsson, Iréne
(författare)
-
Välbefinnande och demens : Aspekter på välbefinnande hos äldre personer med måttlig till svår demens
- 2011
-
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.
|
|
