This project has been devoted to design a computer system with a tangible user interface, in the context of future supervision of remote drop-in dialysis patients. The tangible computer system was developed as an example of how two concepts in human work, accountability and awareness, can be supported through tangible user interfaces. A current trend within CSCW discusses accountability in design in terms of how software should make its own actions accountable. We choose to use an alternative route, namely to use the tangible interface for explicating nurses and patients actions for each other. Explicating actions is key benefit with a tangible interface in work environments that is physical co-located. We conclude that our strategy can be investigated further in settings where the work is carried out in a physical co-located space.

The concept of health-related quality of life (HRQoL) had been used as a patient reported outcome measure in healthcare settings. It has been conceptualised and measured using validated instruments in the Western scientific community. However, in the Saudi literature, the true meaning of this concept is still lacking. The aim of this study is to explore the gap in literature and define the concept of HRQoL, identify its key domains and conceptualise it as perceived specifically by patients with renal failure and undergoing haemodialysis in Saudi Arabia. This PhD included two strands, an empirical qualitative study and a critical analysis of the HRQoL concept and its measurement in the Western as well as the Saudi literature. Using qualitative research methods, the empirical study was conducted in one centre in the Eastern Region of Saudi Arabia. Twenty two In-depth qualitative interviews were conducted in the Arabic language, recorded, transcribed and translated into English. Thematic analysis was performed to analyse the data as the transcripts were coded, the categories identified and the themes generated. The conceptual analysis of HRQoL was carried out after the review of the Western literature on the quality of life (QoL) conceptual models and the measuring instruments used in renal literature. Systematic review of the Saudi HRQoL literature was performed as well to understand the meaning and methods of measurement of the concept of HRQoL. The conceptual analysis of HRQoL revealed that the concept is poorly defined in the Saudi literature; its measurement was based on instruments that are not culturally-adapted. Hence the findings are subjected to questions of validity and reliability. The QoL conceptual models have been developing in the Western literature as well as measuring instruments for patients with renal failure. However, the adoption of these models or instruments is critical due to social, cultural and religious variations between Saudi Arabia and the Western societies. Seven themes defining HRQoL emerged from the qualitative data; these reflected the subjectivity of the concept. The domains of HRQoL were the physiological, social, psychological, religious and vocational domains. Each of those domains was defined by determinants that affect other domains and the overall HRQoL. These were synthesised into a single definition, which incorporated all five domains. A model of HRQoL of patients undergoing haemodialysis in Saudi Arabia was developed explaining the relationship between the key domains and HRQoL. Healthcare services were discussed as a factor that affects the health status of patients and plays an indirect role in the life quality of this patient group. Hence it was considered as a factor rather than a domain. This study, including the conceptual analysis and the empirical study, illustrates that the concept of HRQoL is highly individual and is affected by the views of individuals living in a specific culture. Additionally, it is affected by the social, cultural and religious backgrounds of those individuals. The conceptualisation of HRQoL in this study was almost similar to the Western conceptualisation, however, the relationships between the key domains of HRQoL and their determinants differed. The social and religious domains were highly influenced by the Arabic culture and the Islamic religion. HRQoL in patients with ESRD in the Eastern Region of Saudi Arabia has a different meaning and conceptualisation from that seen in comparable Western literature. The assessment of HRQoL of patients with renal failure and on haemodialysis in Saudi Arabia requires a culturally-adapted instrument. This would ensure valid and reliable results that could be used in decision-making and the planning of care.

Bakgrund: Njursvikt innebär en nedsatt filtreringsförmåga och delas in i två tillstånd, akut och kronisk. Akut njursvikt utvecklas inom kort tid med kraftigt reducerad glomerulär filtration och leder till ett allvarligt tillstånd, medan vid kronisk njursvikt försämras kapaciteten långsamt under en längre tid och i det senare skedet krävs kontinuerlig dialysbehandling. Personer som drabbas av njursvikt behöver dialysbehandling för att uppehålla livet. Många väljer en behandlingsform med hembaserad dialys som innefattar både hemodialys (HD) och peritonealdialys (PD). Det krävs mycket självhantering vid utförandet av dialys i hemmet, och för att leva med sjukdomen behöver personen har förståelse för egenvård och samarbete med sjukvården.    Syfte: Att belysa personers upplevelser av att leva med hembaserad dialysbehandling vid kronisk njursvikt. Metod: Litteraturöversikten baserades på tio vetenskapliga artiklar med kvalitativa ansatser.  Artiklarna hämtades från databaserna CINAHL complete och PubMed med års begränsning 2009-2019. Resultat: Fyra teman framkom kring upplevelser att leva med dialys i hemmet: En förändrad livssituation påverkar självbild och kroppsuppfattning, Behov av stöd och hjälp vid egenvård, Upplevelser av begränsningar och anpassning och En känsla av frihet och ökad livskvalitet. Diskussion: I metoddiskussionen diskuteras styrkor och svagheter i hur studien har genomförts. Resultatet diskuteras mot Orems egenvårdteori, tidigare forskning och riktlinjer. En stor del av diskussionen understryker betydelsen av personers egenvårdsförmåga i samband med livsförändring och anpassningsprocess samt betydelsen av stöd och hjälp från sjukvården och närstående. / Background: Kidney failure includes reduced filtration ability and can be categorised into an acute and a chronic form. Acute renal failure develops within a short timeperiod and comes with a heavily reduced glomerular filtration whereas chronic kidney failure progresses slowly during a longer period of time and in the later stages, continuous dialysis treatment becomes necessary. Individuals afflicted by renal failure need dialysis treatment to survive. Many people choose a home-based dialysis including both haemodialysis and peritoneal dialysis. Home -based dialysis necessitates much individual efforts and to live with the disease there is a need for understanding selfcare as well as collaborating with national health care. Aim: To review individual experiences from living with home-based dialysis with chronic renal failure. Method: A literature review was based on ten scientific articles with qualitative methodology. The articles were obtained from the databases CINAHL complete and PUBMed covering 2009 to 2019. Results: Four themes associated with the experiences from living with home-dialysis emerged: A changed self - and body image, Need of support and help during selfcare, Experiences from limitations and adjustments, A sense of freedom and increased quality of life. Discussion: In the discussion on methodology, strength and weaknesses of the study is discussed. The results are discussed in the context of the self-care theory of Orem, previous research and guidelines.  A major part of the discussion underlines the importance of the self-care ability of the individual in the context of lifestyle changes and in the process of adjustment. Also the importance of support and help by the health-care system and relatives is emphasised.

1 electroninc resource (ix, 86 leaves) / This study aimed at exploring and describing the perceptions of relatives of patients with chronic renal failure regarding kidney donation. The number of patients suffering from chronic renal failure awaiting kidney transplantation is on the increase, while the treatment they get in the interim is not cost effective. The researcher used qualitative descriptive and exploratory research using the Potter and Perry’s Health Belief Model. She applied purposive sampling and used semi structured interviews to collect data from 45 participants who were all relatives of patients coming for haemodialysis at a selected hospital in KwaZulu-Natal. Data analysis identified participants’ perceptions regarding chronic renal failure and kidney donation. Findings of the study revealed that most relatives were fully aware of kidney donation, but fear and lack of knowledge regarding kidney transplantation were the main barriers to them offering themselves for kidney donation. The researcher recommends that the Renal Transplant Multidisciplinary Committee should ensure the public is informed about kidney donation and more intensive education should be given to the relatives of patients suffering from chronic renal failure at an early stage in the illness to give them more time to come to terms with the concept of kidney donation. / Health Studies / M.A. (Health Studies)

This thesis is comprised of four studies and concerns haemodialysis patients’ confidence in being able to manage fluid intake between treatment sessions, and whether the fluid intake is influenced by certain modifiable characteristics of the persons in question. The overall aim was to study aspects of excessive fluid overload and haemodialysis patients’ self-regulation of fluid allotment from a bio-psychosocial and behavioural medicine perspective. The extent of non-adherence to fluid allotment was described in Study I. National registry data were used. Three out of ten Swedish haemodialysis patients had excessive fluid overload and one out of five was at risk for treatment related complications due to too rapid ultrafiltration rate. The objective in Study II was to develop and psychometrically evaluate a self-administered scale to measure situation-specific self-efficacy to low fluid intake. The measure (the Fluid Intake Appraisal Inventory) was found to be reliable and valid in haemodialysis settings. Subgroups based on individual profiles of self-efficacy, attentional style and depressive symptoms were explored in Study III using a cluster analytic approach. Three distinct subgroups were found and the subgroup structure was validated for clinical relevance. The individuals’ profile concerning self-efficacy, attentional style and depressive symptoms has to be taken into account in nursing interventions designed to reduce haemodialysis patients’ fluid intake. In Study IV, an intervention designed to reduce haemodialysis patients’ fluid intake was introduced and its acceptability, feasibility and efficacy were evaluated and discussed. Acceptability of such an intervention was confirmed. Addressing beliefs, behaviours, emotions and physical feelings is clinically feasible and may reduce haemodialysis patient’s excessive fluid overload. This thesis indicates that there is a potential for improvement in the fluid management care of haemodialysis patients. Behavioural nursing strategies that aim to assist patients to achieve fluid control should be applied more extensively. Cognitive profiles of the patients should be taken into account when targeted nursing intervention aiming to encourage and maintain the patient’s fluid control is introduced.

This thesis is comprised of four studies and concerns haemodialysis patients’ confidence in being able to manage fluid intake between treatment sessions, and whether the fluid intake is influenced by certain modifiable characteristics of the persons in question. The overall aim was to study aspects of excessive fluid overload and haemodialysis patients’ self-regulation of fluid allotment from a bio-psychosocial and behavioural medicine perspective. The extent of non-adherence to fluid allotment was described in Study I. National registry data were used. Three out of ten Swedish haemodialysis patients had excessive fluid overload and one out of five was at risk for treatment related complications due to too rapid ultrafiltration rate. The objective in Study II was to develop and psychometrically evaluate a self-administered scale to measure situation-specific self-efficacy to low fluid intake. The measure (the Fluid Intake Appraisal Inventory) was found to be reliable and valid in haemodialysis settings. Subgroups based on individual profiles of self-efficacy, attentional style and depressive symptoms were explored in Study III using a cluster analytic approach. Three distinct subgroups were found and the subgroup structure was validated for clinical relevance. The individuals’ profile concerning self-efficacy, attentional style and depressive symptoms has to be taken into account in nursing interventions designed to reduce haemodialysis patients’ fluid intake. In Study IV, an intervention designed to reduce haemodialysis patients’ fluid intake was introduced and its acceptability, feasibility and efficacy were evaluated and discussed. Acceptability of such an intervention was confirmed. Addressing beliefs, behaviours, emotions and physical feelings is clinically feasible and may reduce haemodialysis patient’s excessive fluid overload. This thesis indicates that there is a potential for improvement in the fluid management care of haemodialysis patients. Behavioural nursing strategies that aim to assist patients to achieve fluid control should be applied more extensively. Cognitive profiles of the patients should be taken into account when targeted nursing intervention aiming to encourage and maintain the patient’s fluid control is introduced.

This study aimed at exploring and describing the perceptions of relatives of patients with chronic renal failure regarding kidney donation. The number of patients suffering from chronic renal failure awaiting kidney transplantation is on the increase, while the treatment they get in the interim is not cost effective. The researcher used qualitative descriptive and exploratory research using the Potter and Perry’s Health Belief Model. She applied purposive sampling and used semi structured interviews to collect data from 45 participants who were all relatives of patients coming for haemodialysis at a selected hospital in KwaZulu-Natal. Data analysis identified participants’ perceptions regarding chronic renal failure and kidney donation. Findings of the study revealed that most relatives were fully aware of kidney donation, but fear and lack of knowledge regarding kidney transplantation were the main barriers to them offering themselves for kidney donation. The researcher recommends that the Renal Transplant Multidisciplinary Committee should ensure the public is informed about kidney donation and more intensive education should be given to the relatives of patients suffering from chronic renal failure at an early stage in the illness to give them more time to come to terms with the concept of kidney donation. / Health Studies / M.A. (Health Studies)

<p>All images in this document may not be produced without the expressed written consent of the author.</p> / <p>The innovative research method of “body mapping” was used in this study with geriatric inpatients receiving daily hæmodialysis therapy for end-stage renal disease at Toronto Rehabilitation Institute.</p> <p>Five people took part in this study; three participants completed all study phases. They created three body maps each and took part in one follow up, semi-structured interview to share their experiences of body mapping. Two themes were drawn from the data: (1) body mapping gives patients a voice to communicate their experiences in the dialysis unit; and (2) body mapping makes visible participants’ illness adjustment patterns, and levels of connection, or disconnection in the dialysis unit.</p> <p>Based on the ways body mapping benefitted participants in this study, it is reasonable to suggest that this visual communication tool could be useful in other research settings, and as a clinical tool to support patients’ attention to their bodies and their interactions with healthcare providers.</p> / Master of Arts (MA)

Volume overload is a common feature in patients on haemodialysis (HD). This contributes significantly to the cardiovascular disease burden seen in these patients. Clinical assessments of the volume state are often inaccurate. Techniques such as interdialytic blood pressure, relative blood volume monitoring, bioimpedance are available to improve clinical effectives. However all these techniques exhibit significant shortcomings in their accuracy, reliability and applicability at the bed side. We evaluated the usefulness of a dual compartment monitoring technique using Continuous Segmental Bioimpedance Spectroscopy (CSBIS) and Relative Blood Volume (RBV) as a tool to assess hydration status and determine dry weight. We also sought to evaluate the role of Atrial Natriuretic Peptide (ANP) and B-type Natriuretic Peptide (BNP) as a volume marker in dialysis patients. The Retrospective analysis of a historical cohort (n = 376, 55 Diabetic) showed a significant reduction in post-dialysis weights in the first three months of dialysis (72.5 to 70kg, p<0.027) with a non-significant increase in weight between months 6-12. The use of anti-hypertensive agents reduced insignificantly in the first 3 months, increased marginally between months 3-6 and significantly increased over the subsequent 6 months. The residual urea clearance (KRU) fell and dialysis times increased. The cohort was very different to that dialysing at Tassin and showed a dissociation between weight reduction and BP control. This may relate to occult volume overload. CSBIS-RBV monitoring in 9 patients with pulse ultrafiltration (pulse UF) showed distinct reproducible patterns relating to extra cellular fluid (ECF) and RBV rebound. An empirical Refill Ratio was then used to define the patterns of change and this was related to the state of their hydration. A value closer to unity was consistent with the attainment of best achievable target weight. The refill ratio fell significantly between the first (earlier) and third (last) rebound phase (1.97 ± 0.92 vs 1.32 ± 0.2). CSBIS monitoring was then carried out in 31 subjects, whilst varying dialysate composition, temperature and patient posture to analyse the effects of these changes on the ECF trace and to ascertain whether any of these interventions can trigger a change in the slope of the ECF trace distinct to that caused by UF. Only, isovolemic HD caused a change in both RBV and ECF in some patients that was explained by volume re-distribution due to gravitational shifts, poor vascular reactivity, sodium gradient between plasma and dialysate and the use of vasodilating antihypertensive agents. This has not been described previously. These will need to be explored further. The study did demonstrate a significant lack of comparability of absolute values of RECF between dialysis sessions even in the same patient. This too has not been described previously. This is likely to be due to subtle changes in fluid distribution between compartments. Therefore a relative changes must be studied. This sensitivity to subtle changes may increase the usefulness of the technique for ECF tracking through dialysis. The potential of dual compartment monitoring to track volume changes in real time was further explored in 29 patients of whom 21 achieved weight reductions and were able to be restudied. The Refill Ratio decreased significantly in the 21 patients who had their dry weights reduced by 0.95 ± 1.13 kg (1.41 ± 0.25 vs 1.25 ± 0.31). Blood pressure changes did not reach statistical significance. The technique was then used to examine differences in vascular refill between a 36oC and isothermic dialysis session in 20 stable prevalent patients. Pulse UF was carried out in both these sessions. There were no significant differences in Refill Ratios, energy removed and blood pressure response between the two sessions. The core temperature (CT) of these patients was close to 36oC and administering isothermic HD did not confer any additional benefit. Mean BNP levels in 12 patients during isovolemic HD and HD with UF did not relate to volume changes. ANP concentrations fell during a dialysis session in 11 patients from a mean 249 ± 143 pg/ml (mean ± SD) at the start of dialysis to 77 ± 65 pg/ml at the end of the session (p<0.001). During isolated UF levels did not change but fell in the ensuing sham phase indicating a time lag between volume loss and decreased generation. (136±99 pg/ml to 101±77.2 pg/ml; p<0.02) In a subsequent study ANP concentrations were measured throughout dialysis and in the post-HD period for 2 hours. A rebound in ANP concentration was observed occurring at around 90 min post-HD. The degree of this rebound may reflect the prevailing fluid state and merit further study. We have shown the utility of dual compartment monitoring with CSBIS-RBV technique and its potential in assessing volume changes in real time in haemodialysis patients. We have also shown the potential of ANP as an independent marker of volume status in the same setting. Both these techniques merit further study.

Chronic kidney disease (CKD) and acute kidney injury (AKI) are major public health problems. It is important to be able to identify those at high risk of adverse outcome, CKD progression and associated cardiovascular disease. The aim of the thesis was to study novel promising biomarkers, their relationship to kidney function, chronic inflammation and/or cardiovascular risk - placental growth factor (PlGF), pregnancy associated plasma protein A (PAPP-A), matrix metalloproteinase 2 (MMP-2), matrix metalloproteinase 9 (MMP-9), soluble receptor for advanced glycation end products (sRAGE), calcium binding protein S100A12 or extracellular newly identified RAGE binding protein (EN-RAGE), and high mobility group box protein-1 (HMGB-1) in patients with renal diseases including CKD, haemodialysis (HD), AKI patients, and healthy controls for comparison. First study revealed that PlGF is elevated in patients with decreased renal function. Second study demonstrated the association of MMP-2 and PAPP-A with proteinuria in patients with CKD. Moreover, serum MMP-2, MMP-9 and PAPP-A levels significantly differed in patients with various nephropathies. EN-RAGE levels are not elevated in patients with CKD, but are related to inflammatory status. PAPP-A, EN-RAGE and HMGB-1 levels are significantly elevated, but sRAGE and PlGF...