Bakgrund: Individer med psykisk sjukdom har sämre hälsa och ökad dödlighet i somatiska sjukdomar jämfört med befolkningen i övrigt. Sjukdomstillstånden kan också leda till svårigheter att klara av vardagen och bidra till försämrad livskvalitet. Det är av stor vikt att sjuksköterskan får en tydlig bild av vad som påverkar livskvaliteten hos patienten och till hjälp finns ett antal olika instrument för att mäta hälsa och livskvalitet, bl.a. The Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW). Syfte: Att undersöka individuell livskvalitet hos patienter med psykisk sjukdom med hjälp av SEIQoL-DW, samt att undersöka patienters och behandlares uppfattning om instrumentets tillämpbarhet och användbarhet. Metod: Patienter inom den psykiatriska vården fyllde i SEIQoL-DW-formuläret med stöd av behandlare. Därefter fyllde båda parterna i en enkät om instrumentets användbarhet. Materialet analyserades kvantitativt och kvalitativt. Resultat: Patienterna som deltog i studien skattade Relationer/Socialt nätverk som det viktigaste livsområdet, följt av Arbete. Det område som upplevdes fungera bäst, det vill säga det område som hade högst nivå, var Familj. Lägst nivå hade Arbete, vilket var det område som fungerade sämst. De flesta patienter och alla behandlare ansåg att frågorna i formuläret var relevanta respektive angelägna, samt att formuläret kan vara ett bra stöd vid samtalet. Runt hälften av patienterna ansåg att det helt eller delvis tog lång tid att fylla i formuläret. Slutsats: Trots att livskvalitet är något individuellt anger många patienter samma livsområden som viktiga. Instrumentet är användarvänligt till stor del, men patienten kan behöva stöd för att fylla i formuläret. / Background: People with mental illness have poorer health and increased mortality from somatic diseases compared with the general population. The diseases can also lead to difficulties in coping with everyday life and reduced quality of life. It is very important that the nurse gets a clear picture of what affects the patient’s quality of life. There are a number of different instruments for measuring health and quality of life, e.g. The Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW). Aim: To examine individual quality of life amongst patients with mental illness with the assistance of SEIQoL-DW. The second aim was to study the feasibility and applicability of the instrument. Method: Patients in psychiatric care filled in the SEIQoL-DW-form with support of the health care staff. Then both the patient and the health care staff filled in a questionnaire about the instrument's usability. The material was analyzed quantitatively and qualitatively. Results: Patients participating in the study estimated Relationships/Social network as the most important area of life. The area that generally was perceived to work best was Family, Work had the lowest level. Most of the patients and all of the health care staff considered the instrument to be relevant and a good support for the dialogue. About half of the patients considered the form to be time-consuming. Conclusion: Although quality of life is something individual, many of the patients stated the same areas of life as important. The instrument is user-friendly to a great extent, but the patient may need assistance to complete the form.

本研究目的為使用個人化生活品質評量表直接權重版(SEIQoL-DW)，評估國內血液透析患者的個人化生活品質，探討對其特別重要的生活品質向度與相關影響因素，此外，並以Locke(1969, 1976)(引自Wu & Yao,2006b)的「情感間距假設」、Calman(1984)的期望理論與Wu(2009)提出的移轉傾向指標為基礎，探討SEIQoL-DW重要性評估程序的應用價值與潛在臨床應用指標。研究對象以立意取樣，自台北市松山區某私人洗腎中心募集57名血液透析患者、以及台北市文山區一般社區成人60名，研究工具包含SEIQoL-DW、生活滿意度量表、焦慮與憂鬱評量表、自編人口背景/疾病變項問卷，統計方法含描述性統計、卡方檢定、相關分析、平均數差異檢定與迴歸分析。研究結果發現，血液透析患者最常列舉的重要生活向度為健康(77%)，其次依序為家庭(72%)、經濟(65%)、人際關係(53%)、休閒活動(49%)、因應/正向態度(23%)、工作/學業(21%)、心理健康(16%)、生活條件(16%)、靈性/信仰(9%)、角色功能(9%)、其他(9%)，血液透析患者在各向度提名百分比與一般成人組未有顯著差異，但血液透析患者對健康向度的現況評比顯著較低，對健康的現況-期望落差也顯著較高，共病數與血液透析患者個人化生活品質指標有顯著負相關；而SEIQoL-DW項目重要性對項目現況分數與整體滿意度之間的關係不具調節效果，SEIQoL-DW的權重程序未能提升對整體滿意度的解釋力，此外，自項目重要性與現況-想望落差所得移轉傾向指標，和整體生活滿意度、SEIQoL-DW現況平均數亦未有一致的相關性或獨特解釋力。儘管本研究不支持SEIQoL-DW權重程序或衍生指標的助益，但若從個人脈絡來看，向度重要性仍可協助探索個案生活目標重要順序，有其臨床醫療應用價值；最後，SEIQoL-DW個人現況-想望落差分數、現況平均數、以及整體生活滿意度、負向情緒彼此有顯著關聯性與解釋力，在個案生活滿意度、負向情緒評估或介入方案中，具有成為臨床應用指標的潛力。 / The primary purpose of this thesis was using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) to explore hemodialysis patients’ Individual Quality of Life and relative determinants. And further using affect-range hypothesis (Locke, 1969, 1976), expection theory (Calman,1984) and shifting tendency Index(Wu, 2009) as framework to evaluate SEIQoL-DW weighting procedure’s efficiency and potential clinical application variables. 57 hemodialysis patients and 60 counterparts was recruited from Taipei city, IQoL was assessed by SEIQoL-DW, the general life satisfaction and anxiety /depression statement was chosen as criterian variables. In the analysis, twelve quality of life domains were identified. Health(77%), family(72%), finance(65%), relations(53%) and leisure time(49%) were the most prominent quality of life domains of hemodialysis patients, although the domains nominated percentage and importance rating didn’t differ between groups, hemodialysis patients’ health domain status and have-want discrepancy were worse than the counterparts. Among the investgated variables, only the comorbidity had negative correlation with hemodialysis patients’ IQoL. The result didn’t support the SEIQoL-DW’s weighting procedure and shifting tendency Index had significant efficiency, but the weighing information could still be useful in personal profile context. Finally, the personal have-want discrepancy, satus average, general life satisfaction and anxiety/depression statement have significant relations with each other, thus could be the potential clinical application variables in negative emotion or life satisfaction intervention programs.

Many people with the incurable and often times fatal motor neuron diseases have pain, but there is lack of knowledge about people’s experiences of living with pain. Further, the correlation between pain and their quality of life is not well understood, and previous studies have not used individual quality of life, namely that people with their own words express what quality of life is.   The aim of these studies was to explore the experiences of pain and the association between pain and quality of life in people with MND. Methods: Study I was explorative about the individual experience of pain, while study II was correlational between pain, pain severity, disease severity and IQOL. Study I was qualitative, whereas study II used both qualitative and quantitative analysis. Results and conclusions: People with motor neuron diseases experienced pain to have multiple characteristics and impact. However, the results emphasise that the individual experienced some pain characteristics as difficult and that pain could worsen functions that were already affected by the disease. The experience was also that it could be challenging to manage pain. However, the symptom of pain could pass unnoticed in contacts with healthcare professionals (study I). The three most important areas for individual quality of life in both participants with and without pain were: Social relations, followed by Activities for amusement and relaxations, and Being in the outdoor environment. Individual quality of life was noticed to be good regardless of pain. Pain and pain severity were not found to be associated with satisfaction of individual quality of life in patients with motor neuron diseases, neither was disease severity. The results support previous findings, that strong associations between symptoms of MND and IQoL are not obvious. However, this does not infer that pain in people with MNDs should be neglected and undertreated. On the contrary, it seems to be important for healthcare to pay more attention to pain in people with motor neuron diseases and that pain continuously is measured, individually treated and followed. Regardless of whether persons with MND have pain or not, the results point to the importance of healthcare professionals providing support to not only the patient but also the patient’s family and friends, as well as assisting in various forms of relaxing activities and possibility of being in the outdoor environment.