Tid, rum och självbestämmande : Möjligheter och hinder i vardagen för äldre personer med intellektuell funktionsnedsättning på gruppboende

People with intellectual disability are living longer, which creates new demands for the support and care of this target group. Participation and autonomy at all ages, regardless of functional capacity, are cited in legislation and among the key objectives of disability policy. As a group, older people with intellectual disability have previously been almost invisible in both policy documents and research. Information regarding this group is thus limited, and more systematic knowledge is needed about older people with intellectual disability, their daily lives, and especially their opportunities for autonomy. The purpose of this thesis is to learn more about the role of influence and autonomy in everyday life from the perspective of older people with intellectual disability living in group homes. This will be achieved by studying situations in which opportunities and obstacles arise for these residents to exercise their autonomy in daily life, and identifying and analysing how autonomy is expressed in the meeting between residents and staff. The study applies an ethnographic approach, using methods including field studies with observations and videotaped meetings between residents and staff. The sample consists of residents aged 65 and over and staff at three group homes for people with intellectual disability. One resident at each group home is followed in greater depth. The analysis uses the time-geographic concepts of project, activity and restrictions in order to clarify where and when different projects are carried out, as well as who has the power to determine what is to be carried out. Interaction analysis is used to analyse the videotaped meetings between residents and staff. The analysis is based on Goffman’s interaction order and interaction rituals, theories about turntaking, both verbal and non-verbal, and theories about power and counter-power. In accordance with Goffman’s framework concept, the starting point is the concrete framework that reflects spatiality, which in turn becomes a way to place the more abstract framework of the situation into a specific context. Two major projects were identified: Sleep and Rest and Meals. The analysis reveals projects that are governed by the resident’s own preferences (individual projects) and projects that are governed to a greater degree by the staff’s objectives and opportunities (institutional projects). Some guidance also derives from municipal decisions and guidelines (organizational projects). Many projects were carried out based on staff decisions and objectives, but in actual practice many projects failed to get off the ground. Some projects were at risk of failure until something happened or someone intervened and thereby rescued the project so that it could be implemented. The interactional analysis perspective shows how autonomy is constructed in the meeting. Autonomy is situation-bound, and shifts more on the basis of context than in relation to specific individuals. The study includes decision situations mainly between autonomy and its opposite, paternalism, which are viewed as extremes on a continuum. However, certain factors lead to stronger autonomy in certain situations. When a resident can define the situation, they also have greater power to determine the outcome. In situations characterized by paternalism, the staff have a preferential right of interpretation and the power to decide, both on the basis of their knowledge and because of the asymmetrical interdependence that characterizes the resident-professional relationship. Such situations are also governed by the rules and procedures of the group home to a greater degree than those situations in which the resident exercises autonomy. The thesis discusses strategies that could increase the residents’ opportunities for autonomy. Greater communication skills among staff can be viewed as a step on the path toward greater autonomy for the residents. Staff have the potential to eliminate obstacles, to strengthen inadequate skills or create new ones by providing choices and assistive devices, and to exercise an affirmative approach.

Talking about quality: exploring how ‘quality’ is conceptualized in European hospitals and healthcare systems

BACKGROUND: Conceptualization of quality of care - in terms of what individuals, groups and organizations include in their meaning of quality, is an unexplored research area. It is important to understand how quality is conceptualised as a means to successfully implement improvement efforts and bridge potential disconnect in language about quality between system levels, professions, and clinical services. The aim is therefore to explore and compare conceptualization of quality among national bodies (macro level), senior hospital managers (meso level), and professional groups within clinical micro systems (micro level) in a cross-national study. METHODS: This cross-national multi-level case study combines analysis of national policy documents and regulations at the macro level with semi-structured interviews (383) and non-participant observation (803 hours) of key meetings and shadowing of staff at the meso and micro levels in ten purposively sampled European hospitals (England, the Netherlands, Portugal, Sweden, and Norway). Fieldwork at the meso and micro levels was undertaken over a 12-month period (2011-2012) and different types of micro systems were included (maternity, oncology, orthopaedics, elderly care, intensive care, and geriatrics). RESULTS: The three quality dimensions clinical effectiveness, patient safety, and patient experience were incorporated in macro level policies in all countries. Senior hospital managers adopted a similar conceptualization, but also included efficiency and costs in their conceptualization of quality. 'Quality' in the forms of measuring indicators and performance management were dominant among senior hospital managers (with clinical and non-clinical background). The differential emphasis on the three quality dimensions was strongly linked to professional roles, personal ideas, and beliefs at the micro level. Clinical effectiveness was dominant among physicians (evidence-based approach), while patient experience was dominant among nurses (patient-centered care, enough time to talk with patients). Conceptualization varied between micro systems depending on the type of services provided. CONCLUSION: The quality conceptualization differed across system levels (macro-meso-micro), among professional groups (nurses, doctors, managers), and between the studied micro systems in our ten sampled European hospitals. This entails a managerial alignment challenge translating macro level quality definitions into different local contexts.

The complexity in the implementation process of empowerment-based chronic kidney care: a case study

Background: This study is part of an interactive improvement intervention aimed to facilitate empowerment-based chronic kidney care using data from persons with CKD and their family members. There are many challenges to implementing empowerment-based care, and it is therefore necessary to study the implementation process. The aim of this study was to generate knowledge regarding the implementation process of an improvement intervention of empowerment for those who require chronic kidney care. Methods: A prospective single qualitative case study was chosen to follow the process of the implementation over a two year period. Twelve health care professionals were selected based on their various role(s) in the implementation of the improvement intervention. Data collection comprised of digitally recorded project group meetings, field notes of the meetings, and individual interviews before and after the improvement project. These multiple data were analyzed using qualitative latent content analysis. Results: Two facilitator themes emerged: Moving spirit and Encouragement. The healthcare professionals described a willingness to individualize care and to increase their professional development in the field of chronic kidney care. The implementation process was strongly reinforced by both the researchers working interactively with the staff, and the project group. One theme emerged as a barrier: the Limitations of the organization. Changes in the organization hindered the implementation of the intervention throughout the study period, and the lack of interplay in the organization most impeded the process. Conclusions: The findings indicated the complexity of maintaining a sustainable and lasting implementation over a period of two years. Implementing empowerment-based care was found to be facilitated by the cooperation between all involved healthcare professionals. Furthermore, long-term improvement interventions need strong encouragement from all levels of the organization to maintain engagement, even when it is initiated by the health care professionals themselves.

The effect of a Computerised Decision Support System (CDSS) on compliance with the prehospital assessment process: results of an interrupted time-series study

BACKGROUND: Errors in the decision-making process are probably the main threat to patient safety in the prehospital setting. The reason can be the change of focus in prehospital care from the traditional "scoop and run" practice to a more complex assessment and this new focus imposes real demands on clinical judgment. The use of Clinical Guidelines (CG) is a common strategy for cognitively supporting the prehospital providers. However, there are studies that suggest that the compliance with CG in some cases is low in the prehospital setting. One possible way to increase compliance with guidelines could be to introduce guidelines in a Computerized Decision Support System (CDSS). There is limited evidence relating to the effect of CDSS in a prehospital setting. The present study aimed to evaluate the effect of CDSS on compliance with the basic assessment process described in the prehospital CG and the effect of On Scene Time (OST). METHODS: In this time-series study, data from prehospital medical records were collected on a weekly basis during the study period. Medical records were rated with the guidance of a rating protocol and data on OST were collected. The difference between baseline and the intervention period was assessed by a segmented regression. RESULTS: In this study, 371 patients were included. Compliance with the assessment process described in the prehospital CG was stable during the baseline period. Following the introduction of the CDSS, compliance rose significantly. The post-intervention slope was stable. The CDSS had no significant effect on OST. CONCLUSIONS: The use of CDSS in prehospital care has the ability to increase compliance with the assessment process of patients with a medical emergency. This study was unable to demonstrate any effects of OST.

The well-being of relatives of patients with atrial fibrillation: a critical incident technique analysis

BACKGROUND: The well-being of relatives of patients having chronic heart diseases (CHD) has been found to be negatively affected by the patient's condition. Studies examining relatives of patients with atrial fibrillation (AF) indicate that their well-being may be affected in a similar manner, but further research is needed. AIM: To explore and describe critical incidents in which relatives of patients experience how AF affects their well-being and what actions they take to handle these situations. DESIGN AND METHOD: An explorative, descriptive design based on the critical incident technique (CIT) was used. Interviews were conducted with 19 relatives (14 women and five men) of patients hospitalised in southern Sweden due to acute symptoms of the AF. RESULTS: The well-being of relatives was found to be affected by their worries (patient-related health), as well as the sacri-ficing of their own needs (self-related health). In handling their own well-being, these relatives adjusted to and supported the patient (practical involvement), along with adjusting their own feelings and responding to the mood of the patients (emotional involvement). CONCLUSION: The well-being of relatives of patients with AF was affected depending on the patients' well-being. In their attempt to handle their own well-being, the relatives adjusted to and supported the patients. Further research is needed in order to evaluate the effects of support to relatives and patients respectively and together.

Reflexiones sobre los cuidados de larga duración en Suecia [Reflections on Long-term care in Sweden]

La provisión de cuidados de larga duración que se ofrecen en Suecia y en el conjunto de los países nórdicos provienen de un recorrido histórico basado en la construcción territorial a través de parroquias y en las redes de solidaridad creadas a partir de la relación entre familias y amigos, por un lado, y estos con el Estado, por otro.

Rättfärdigade prioriteringar - en kvalitativ analys av hur personal i äldreomsorgen hanterar motstridiga verksamhetslogiker

Tidigare forskning visar att äldreomsorgspersonal kämpar med två typer av logiker: en ekonomisk logik och en omsorgslogik. Även om båda logikerna behövs för att skapa god omsorg så utmanar de varandra. Dessa utmaningar kommer till uttryck i omsorgspraktiken där personalen ställs in för val och måste göra prioriteringar. Denna avhandling syftar till att förstå hur äldreomsorgspersonal beskriver att de arbetar för att finna balans mellan logikerna och hur de rättfärdigar sina prioriteringar i omsorgen om de äldre personerna. Frågeställningen för avhandlingen är att ta reda på hur personal och enhetschef vid ett kommunalt äldreboende förstår och hanterar interaktionen mellan de två logiker som styr omsorgsarbetet för att främja de äldre personernas välbefinnande. Syftet innehåller tre delsyften: 1) att analysera personalens erfarenheter av och meningsskapande kring de äldre personernas välbefinnande och deras reflektioner kring det omsorgsarbete de utför, 2) att belysa och problematiserade logiker som styr omsorgsarbetet samt 3) att analysera hur personalen rättfärdigar sina prioriteringar i rådande kontext och hur deras förklarbarhet påverkar deras professionella identiteter. Målet är att bidra med socialvetenskaplig kunskap om de överväganden personal gör när de ställs inför att göra prioriteringar i äldreomsorgens praktik. Material samlades in genom 12 individuella intervjuer med personal vid ett kommunalt äldreboende, en intervju med personalens enhetschef och en uppföljande gruppintervju med tre personer ur personalgruppen. Materialet analyserades med tre analysmetoder: fenomenologisk analys, reflexiv analys och positioneringsanalys. Resultatet visar att personalen definierar de äldre personernas välbefinnande som ett behov av att känna sig existentiellt berörd. Denna känsla av existentiell beröring delas in i tre delar: känsla av valfrihet, känsla av njutning och känsla av närhet till någon eller något. Arbetet för att uppnå detta välbefinnande beskrivs innebära ett balanserande av tre tvetydigheter: att vilja värna om de äldre personernas valfrihet och samtidigt hantera institutionella begränsningar, de äldre personernas behov av aktivering å ena sidan och att de inte behöver aktiveras å andra sidan samt att förstå de äldre personernas behov av rutiner samtidigt som det är svårt att veta vilka behov de har. Tvetydigheterna kontextualiserades och de två logikerna som styr omsorgsarbetet analyserades. Analysen visar att enhetschefen skapar en hybrid av den ekonomiska logiken och omsorgslogiken; ekonomi är omsorg och vice versa. Denna hybrid möter motstånd från personalen som skiljer på de båda logikerna genom att tala om ”vård och det där andra”. Personalen upplever att den ekonomiska logiken begränsar deras möjligheter att utföra omsorg i linje med omsorgslogiken. Motsättningar mellan de båda logikerna leder till prioriteringar som rättfärdigas av personalen i syfte att behålla de professionella identiteterna. Den teoretiska analysen bygger på teorier om institutionella logiker, förklarbarhet ochprofessionell identitet. Analyserna visar vikten av att väcka dialog mellan enhetschefer och personal där de diskuterar innebörder av olika värdeord som används på politisk nivå. Sådana diskussioner skulle kunna bidra till mindre motstånd och en högre överensstämmelse mellan verksamhetsmål och praktik. Avhandlingen visar även vikten av att förstå logiker som vertikala istället för horisontellt uppdelade. Alltså, att styrande verksamhetslogiker existerar uppifrån och ned i verksamheter (från politisk nivå till chefsnivå och till praktisk nivå) och att de inte kan delas in i exempelvis en professionslogik och en styrningslogik. Den senare synen kan bidra till potentiella missförstånd eftersom det gör att konflikter kan tolkas existera mellan personal och chef, medan de egentligen existerar mellan olika motstridiga värderingssystem. Slutsatsen är att de båda logikerna behövs för att stödja äldre personers välbefinnande. Ibland är logikerna samspelta och ibland är de i konflikt med varandra. När logikerna ställs mot varandra är det av vikt att komma ihåg att den ekonomiska logiken är lika förhandlingsbar som omsorgslogiken. De två logikerna existerar i samspel och om deras motstridigheter inte belyses finns risk att omsorgspraktiken inte stödjer de äldre personernas välbefinnande.