Background It is estimated that up to 50% of individuals begin dialysis with a suboptimal start. Objective To explore the transition to home dialysis, with a special emphasis on this transition after a suboptimal start. Methods A two-phased mixed methods study including: 1) a scoping review and meta-synthesis on the facilitators and barriers to home dialysis and 2) a qualitative study using thematic analysis on the transition to home dialysis after a suboptimal start. Findings 12 studies were included in the scoping review. Principle facilitators and barriers included Support, Burden of Care, and Disruption of Life. Six individuals were included into the qualitative phase. Through their interviews, they expressed the importance of the timely delivery of information, support, living with loss, managing fear, living with hope, and learning to live with dialysis. Conclusions The facilitators and barriers to home dialysis were similar in both studies suggesting that the transition to home dialysis is similar regardless of the nature of dialysis start. Several subthemes obtained from the qualitative study however revealed that a suboptimal dialysis start entails unique challenges, requiring the delivery of more support and education.

Bakgrund: Antal personer som lever med kronisk njursvikt ökar med befolkningsökningen. Peritonealdialys är en vanlig livsuppehållande behandling för patienter som lever med kronisk njursvikt som främst sköts av patienter i hemmet. För att kunna fortsätta leva med sjukdomen under kontroll kräver peritonealdialys införande av nya livsförändringar som på olika sätt kan vara påfrestande för patienterna. Syfte: Syftet var att beskriva patienters upplevelser av att leva med peritonealdialys i sin vardag. Metod: Litteraturöversikten baserades på elva vetenskapliga artiklar med kvalitativa ansatser hämtade från databaserna CINAHL complete och PsyINFO. Sökorden som användes vid artikelsökning var patient experience, living with" och "peritoneal dialysis" som vidare utökades till "perspective", "home dialysis, qualitative study och interview'' med års begränsning 2000- 2017. Resultat: Litteraturöversikten visade att patienternas upplevelser av att leva med peritonealdialys innefattade en livsförändringsprocess med upplevelser av övergång som en besvärlig vändpunkt i livet vilket började redan vid PD- initiering. De första sex månaderna var den svåraste tiden att hitta balansen och anpassa sig till ett nytt levnadssätt, under den perioden hade patienterna stora behov av stöd både från sjukvården och det egna sociala nätverket dels för att bearbeta de olika förluster och begränsningar relaterad till PD- behandlingen, dels för att upprätthålla motivationen för att fortsätta sköta sin behandling. Med tiden ökade patienterna upplevelser av oberoende självständighet i att hantera sin egenvård och deras behov av stöd minskade, stödet från sjukvården minskade till enbart rutinkontroller. Diskussion: Patienters upplevelser av att leva med PD diskuterades och analyserades utifrån Orems teori om egenvårdsbalans och tidigare forskning. Större delen av diskussionen understryker betydelse av sjukvårdpersonalens bemötande som kan såväl positivt som negativt påverka patienters upplevelser. Hur väl en patient lyckades med sin egenvård berodde mycket på bemötandet, anpassad information, typ av stöd i patientens sociala nätverk och vilka vårdinsatser patienten fick under behandlingsprocessen.

Introduktion: Med en stigande ålder på befolkningen förväntas andelen människor med njursvikt öka världen över och därmed kommer flertalet att behöva dialys för att ersätta njurarnas funktion. I och med detta kan fler komma att behöva utföra dialys i hemmet. Tidigare forskning säger att dialys i hemmet är en outnyttjad tillgång i världen och dessutom billigare än dialys i center, samtidigt som dialys i hemmet tillåter patienten att utföra mer egenvård. Som teoretisk referensram används Dorothea Orems omvårdnadsteori om egenvård.  Syfte: Detta arbete har som mål att undersöka patienternas erfarenheter av egenvård och dialysbehandling i hemmet.  Metod: För att besvara studiens syfte gjordes en deskriptiv litteraturstudie med artiklar från hela världen.  Resultat: Resultatet visade att ett genomgripande tema framkom: “Patienterna upplevde egenvården i samband med dialys i hemmet som något positivt vilket gav dem mer självständighet, ökad flexibilitet och ökad kontroll. Stöttningen ansågs också viktig för patienten”. Stöd, både från anhöriga och sjukvårdspersonal, kunde vara positivt genom att patienterna fick ökad förståelse för sin sjukdom, ökad självsäkerhet och självförtroende samt skapade trygghet. Stödet kunde också vara negativt då det kunde få patienterna att uppleva erfarenheter som rädsla, frustration och minskad självständighet. Välbefinnande kan öka vid behandling i hemmet, genom bland annat ökad frihet och ökad energi. Känslan av kontroll ökar vid egenvård och behandling i hemmet då behandlingen ofta blir till en rutin för patienten. Modifiering av egenvård är möjlig och görs ofta genom att experimentera och ändra restriktioner och egenvårdstips för att kunna leva ett normalt liv. Slutsats: Studien visar på att egenvård och dialysbehandling i hemmet ofta är positivt för patienterna, men det finns negativa aspekter som patienterna upplever. / Introduction: With an aging population, the amount of people with chronic kidney disease will increase in the world and so will the amount who will need dialysis to replace their kidney function. Consequently, more people will need access to dialysis from home. Studies show that home-dialysis is an untapped resource worldwide and provides patients with a cost effective solution. As a theoretical framework, Dorothea Orems theory of self-care will be used. Aim: The aim of the study is to investigate patients' experience of self-care and dialysis at home. Method: To answer the study's aim, a descriptive review was done by consulting academic research or articles from different areas of the world. Results: The results showed a main theme: “Patients experienced that the self-care in correlation with home-dialysis was seen as positive and gave them independence, flexibility and control. Support was also considered important”. Support with self-care had a big presence, both from healthcare and relatives. Support could be both positive and negative, while providing the patient with a better understanding of their disease, self-assurance, and safety, it was also the root of frustration and a reduction in independence. Wellbeing could improve through home-dialysis through increased freedom and energy. The feeling of control also increased through self-care and dialysis-treatment and both often became a routine. Modifications in self-care are often made through experimenting and patients' own changes of restrictions and self-care tips, made to live a normal life. Conclusion: The study shows that self-care and dialysis-treatment at home was often seen as positive by the patient, but there are negative aspects that patients also experience.

Bakgrund: Det finns ett stort intresse för hemdialys. Sjuksköterskan ska jobba personcentrerat och främja personers självbestämmande redan vid val av dialysmetod och vid undervisningen av hemdialys. Användningen av hemsjukvård ökar och därav behovet av kunniga sjuksköterskor inom hemdialys. Sjuksköterskan ska stötta personer i sin egenvård. Syfte: Syftet var att beskriva personers upplevelser av hur vardagslivet påverkas vid dialysbehandling i hemmet. Metod: Studiens design var en allmän litteraturstudie med induktiv ansats, utförd med strukturerad sökmetod och innehållsanalys. Resultat: Personerna upplevde ett påverkat vardagsliv med fysiska begränsningar, medikalisering av hemmet och ett försämrat psykiskt mående. Det var svårt att koordinera dialysschemat mot arbete, fritidsintressen och familjeliv. Livet med hemdialys upplevdes också som ett normaliserat liv i jämförelse med hemodialys på mottagning. Resultatet delades in i tre huvudkategorier: Fysisk påverkan, Praktisk påverkan och Psykisk påverkan. Konklusion: Personer upplevde vardagslivet som förändrat, men uppskattade att möjligheten till hemsjukvård fanns. Genom en grundlig och individanpassad utbildning kunde sjuksköterskan ge en god och trygg start på behandlingsmetoden som gav personen verktyg till att hantera sin egenvård så bra som möjligt. / Background: There’s a big interest in home dialysis. The nurse’s task is to use person-centred care and to promote people’s autonomy. This should be applied when helping people choose dialysis modalities and during the training programs. The utilisation of home care is increasing and therefore the need of nurses with home dialysis knowledge. The nurse should support people in their self-care. Aim: The aim was to describe the experiences of people’s everyday life when using home dialysis. Method: A general literature review with inductive approach. A structured search method and a content analysis were used. Results: People experienced a changed everyday life in terms of physical limitations, medicalisation of the home and a deteriorated psychological well-being. The people found difficulties coordinating the dialysis schedule with work life, family life and hobbies. Life with home dialysis were also seen as normal compared to in-centre dialysis. The result generated into three main categories: Physical impact, Practical impact and Psychological impact. Conclusions: People experienced everyday life as changed but appreciated the possibility to dialyse at home. With a thorough and individualized training, the nurse can give people a good and safe start to the treatment as well as tools to manage selfcare

Les modalités de dialyse à domicile, soit la dialyse péritonéale (DP) et l’hémodialyse à domicile (HDD), offrent plusieurs avantages aux patients avec insuffisance rénale terminale (IRT), que ce soit par rapport à la qualité de vie ou à une diminution des complications liées à l’IRT. Peu de données sont toutefois disponibles quant aux répercussions cliniques de l’initiation de la thérapie de suppléance rénale via la DP ou l’HDD et de l’optimisation subséquente du traitement à domicile. Le présent mémoire visait donc à répondre aux trois questions suivantes soit (1) la comparaison entre la survie des patients débutant la thérapie de suppléance rénale par une ou l’autre des modalités à domicile, (2) l’évaluation du modèle de dialyse à domicile intégrée (c’est la dire l’initiation de la suppléance rénale en DP avec un transfert subséquent en HDD) et (3) l’évaluation des prédicteurs dudit modèle de dialyse à domicile intégrée. L’évaluation de 11 416 patients ayant débuté la suppléance rénale en Australie et Nouvelle-Zélande entre 2000 et 2012 a montré une association entre une mortalité globale inférieure chez les patients traités par HDD comparativement à ceux traités par DP (rapport des risques [hazard ratio - HR] 0.47, intervalle de confiance [IC] de 95%, 0.38-0.59). Par contre, les patients ayant débuté la suppléance rénale en DP et ayant ensuite été transférés en HDD (modèle de dialyse à domicile intégrée) avaintt une survie en dialyse à domicile similaire à ceux directement traités par l’HDD (HR 0.92, IC de 95%, 0.52-1.62). Finalement, les caractéristiques démographiques de base (jeune âge, sexe masculin, ethnie), les comorbidités, la cause de l’insuffisance rénale terminale, la durée du traitement et la raison de l’arrêt de la DP étaient des prédicteurs du modèle de dialyse à domicile intégrée. / Treatment of end-stage renal disease with home dialysis modalities (peritoneal dialysis [PD] and home hemodialysis [HHD]) is associated with significant patient-related benefits, including improved quality of life, greater autonomy and lower rates of medical complications. Although home dialysis is being increasingly promoted internationally, little data has been published to evaluate outcomes of patients treated with PD and HDD at time of renal replacement therapy (RRT) initiation and evaluate the optimal home dialysis treatment pattern. The current project specifically aimed to answer the following questions: (1) what is the survival associated with initiation of RRT with PD or HDD, (2) what is the survival associated with the integrated home dialysis model (PD with subsequent transfer to HHD) compared to PD or HDD treatment initially, (3) what are the predictors associated with the integrated home dialysis model. The first study included 11 416 incident dialysis patients from Australia and New Zealand between 2000 and 2012. Treatment with HHD at start of RRT was associated with a lower mortality compared to initial treatment with PD (hazard ratio [HR] 0.47, 95% confidence interval [CI] 0.38-0.59). The second study assessed the integrated home dialysis model per se and showed a similar mortality among patients treated with the integrated home model (PD with transfer to HHD after PD ending) and patients treated with HHD from start of RRT (hazard ratio [HR] 0.92, 95% confidence interval [CI] 0.52-1.62). Finally, the third study assessed the predictors of the integrated home dialysis model and identified baseline characteristics such as lower age, male sex, race, cause of end-stage renal disease, comorbidities and duration of PD therapy as potential predictors of a transfer from PD to HHD.

The use of advanced medical technology at home has increased in most industrialized countries. The overall aim of this thesis was to develop knowledge of self-care and transition and issues that influence daily life and health among persons using advanced medical technology at home. Three qualitative studies were performed to describe the structure of self-care (I) and elucidate meanings of health-illness transition experiences among persons using long-term oxygen, or a ventila-tor, or performing blood or peritoneal dialysis (II), and to gain a deeper understanding of the meaning of living with an adult family member in this context (III). Ten interviews with adult patients (I-II) and ten with adult next of kin (III) in this context were performed and analysed with descriptive phenome-nological (I), phenomenological hermeneutical (II) and hermeneutical (III) methods. A quantitative, descriptive, comparative, cross-sectional design was used to describe and find factors that influence self-care agency and perceived health in a larger group of persons (180 patients) using the enumerated types of advanced medical technology at home (IV). In the results, (I) self-care among persons using long-term oxygen, a ventilator, or equipment for blood or peritoneal dialysis at home was described at a generic level, independent of the specific type of technology used. The general description of self-care in this context involved prerequisites for, activities for and consequences of self-care; (II) the health-illness transition among adult persons in this context was interpreted as contentment at being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The successful and healthy transition experience was characterized by human growth and becoming; (III) living with a family member who is using advanced medical technology at home was interpreted as meaning rhythmical patterns of being closely connected to but also separated from him or her, and of sorrow versus reconciliation. Dependence on others was reflected in a need for support from the healthcare professionals and significant others; (IV) health-related and technology-related variables in daily life were rated as satisfactory to quite a high extent, but participants using long-term oxygen perceived their health as significantly lower compared to the other technology groups. Further, a significant difference in sense of coherence was found between users of long-term oxygen and peri-toneal dialysis. Factors that contributed to self-care agency and sense of coherence were found. In conclusion, self-care in a high-tech home context means more than simply mastering the technology. With the goal of maintaining an active, social life, the health-illness transition involves a learning process of accepting and integrating the technology into daily life. With knowledge and support, patients and next of kin are able to assume substantial responsibility for self-care/dependent-care. Daily life seems to be manageable for patients using this kind of technology at home.

<p>This thesis consists of three related studies presented as three separate manuscripts. The first two comprise part of a larger sequential mixed-methods study with a qualitative and subsequent quantitative (survey) component. The overarching goal of this study was to understand the factors that influence the use of home dialysis, from the perspectives of Canadian nephrologists. The third study was a methodological study (a clinical trial) embedded in the survey, evaluating a novel strategy to incentivize survey responses.</p> <p>In the first paper, we aimed to develop a theoretical framework describing determinants of dialysis modality choice. We selected informants using a maximum-variation sampling strategy, and used in-depth interviews to explore their perspectives. We used a grounded theory-informed analytical approach to construct a taxonomy of barriers and related facilitators to home dialysis use. We triangulated our findings against related published studies and qualitative results from our survey study. This study informed the development of the questionnaire that is the focus of the second study.</p> <p>The second paper describes the development, administration, and results of a 47-item survey measuring Canadian nephrologist perspectives on the relevance of barriers to home dialysis use, and the utility of candidate interventions to overcome them. We used factor analysis to aggregate items into domains, and examined the relationships between respondent and practice characteristics with domain-level scores. Respondents expressed enthusiasm and reluctance towards a number of strategies to optimize home dialysis use. Our findings will guide policy development and further research directed at managing barriers to home dialysis use.</p> <p>The third and final study tests the effectiveness of a promised donation as an incentive for survey completion. We randomized survey recipients to receive standard notifications versus notifications that offered a charitable donation of $40 CAD to the Kidney Foundation of Canada in exchange for returning a completed survey. Contrary to our hypothesis, the intervention was not effective, thus adding to the cumulative evidence that such incentives do not impact on physician response rates.</p> / Master of Science (MSc)

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.

Avec la croissance continue du nombre de patients souffrant d’insuffisance rénale terminale dans le monde, dans un contexte de ressources limitées des soins de santé, beaucoup d’emphase est mise sur l’importance de favoriser les modalités de dialyse à domicile, soit la dialyse péritonéale et l’hémodialyse à domicile (HDD). Toutefois, l’HDD est encore très peu utilisée, notamment au Canada. Ce mémoire visait à identifier pour qui, pourquoi et comment il est possible de favoriser l'utilisation de l'HDD dans nos milieux cliniques en se basant sur l'expérience de l'Australie et la Nouvelle-Zélande (ANZ), où le recours à l’HDD est le plus haut dans le monde, afin d’en tirer des leçons qui pourraient être transposées au modèle canadien. Ceci pourrait favoriser l’amélioration des soins des patients et, dans un deuxième temps, réduire les besoins en ressources humaines et les coûts associés aux thérapies de remplacement rénal. Le registre Australia and New Zealand Dialysis & Transplantation (ANZDATA) a été utilisé pour évaluer divers aspects de l’HDD en ANZ de 1997 à 2017. Tout d’abord, la présence d’un effet de centre dans le recours à la dialyse à domicile a été identifiée, démontrant que des caractéristiques, tant au niveau des patients que des centres, étaient responsables de la variabilité dans le taux d’utilisation d’HDD notée entre les centres de dialyse. Ensuite, il a été démontré qu’il n’existait pas d’effet de centre dans la durée de traitement d’hémodialyse, tant à domicile qu’en centre, mais que la variabilité de cette durée était principalement due aux caractéristiques propres aux patients, ainsi qu’à des pratiques variant entre les états/pays, et ce, de manière beaucoup plus notable en HDD. En effet, une plus grande flexibilité est offerte par cette modalité, qui est beaucoup moins affectée par la limitation des ressources que l’hémodialyse en centre. Finalement, il a été démontré que l’HDD était potentiellement une alternative équivalente à la transplantation rénale au niveau de la survie des patients dans le cas d’un greffon reçu d’un donneur à critères étendus. / With the continued growth in the number of patients with end-stage renal disease around the world, in a context of limited healthcare resources, much emphasis is being placed on the importance of promoting home dialysis modalities, namely peritoneal dialysis and home hemodialysis (HHD). However, HHD is still underutilized, especially in Canada. This thesis aimed to identify for whom, why and how it is possible to promote the use of HHD based on the experience of Australia and New Zealand (ANZ), where the use of HHD is the highest in the world, to draw lessons that could be transposed to the Canadian model. The Australia and New Zealand Dialysis & Transplantation (ANZDATA) registry was used to assess various aspects of HHD in ANZ from 1997 to 2017. First, the presence of a center effect in the use of home dialysis was identified, demonstrating that both patient- and center-level characteristics were responsible for the variability noted in the rate of HHD use between dialysis centers. We then showed that there was no center effect in the duration of hemodialysis treatment, neither at home nor in center, but that the variability of this duration was mainly due to the characteristics of the patients, as well as to varying practices between states/countries, and this, more notably in HHD. Indeed, greater flexibility is offered by this modality, which is much less affected by the limitation of resources than in-center hemodialysis. Finally, HHD was shown to be potentially an equivalent alternative to kidney transplantation in terms of patient survival in the case of a transplant received from an expanded criteria donor.