The Changing Face of Psychiatric Nursing –Care or Control?

This report has been written as part of the project “Toward improved quality – developing nurse’s continuing vocational training in hospitals and inpatient units”. Its overall goal is to ensure high quality, ethically appropriate and therapeutically effective interventions to enable nurses to manage distressed and disturbed patients in European psychiatric hospitals and inpatient units. In this large-scale, multinational projects there are all together six European countries involved: Finland, Ireland, England, Portugal, Italy and Lithuania. The project work plan were during autumn 2006 and spring 2007. The content of this publication was produced in the first stage of the project aiming to collect the preliminary source material for the project. The literature review was carried out in the project stage, providing the groundwork for the next steps for the project. This project aims to develop an interactive multinational portal with training material. Therefore, it is important to share an understanding of basic information, psychiatric nurse’s continuing vocational education, laws and ethical codes and patient restriction used in mental health care. In this publication, the purpose of the material produced here is to understand nurses’ educational need related to vocational continuing education and to be used in further project stages as an empirical data collection. The data were collected as a preliminary source material for latter phases where nurse’s perceptions of the current practice, nurse’s attitudes to mental illness, prevalence of use of seclusion room and existing and desired vocational training provision will be collected in six different European countries. The following organisations are involved in this project: University of Turku, Dublin City University, St. Vincent Hospital, National Council for the Professional Development of Nursing and Midwifery, University of Padova, Klaipeda College - Health Faculty, Klaipeda Psychiatric Hospital, Escola Superior de Enfermagem de Lisboa, Centro Hospitalar Psiquiátrico de Lisboa, Omnia Vocational Institution the Espoo Region, Kellokoski psychiatric hospital, Hyvinkää hospital area, Pirkanmaa Hospital District, Kingston University & St. George’s Medical School and South West London & St. George’s Mental Health NHS Trust. A wide variety of different countries, organisations and individuals in this project give us a strong confidence that theoretical, practical, ethical and political issues around the topic of interest will be taken account during this project lifetime. We are aware the content of this book will be partially outdated almost as soon as it has been published. We still hope that this publication will encourage nurses and different professions working in mental health care field to have a basic understanding of similarities and differences between different European countries related in mental health care. We also hope that this publication will inspirate and motivate nurses in maintaining and developing the quality of psychiatric care in Europe.

Evaluation of an e-learning course: coercion practices in psychiatric nursing

The goal of the study was to evaluate an e-learning course entitled “Nursing interventions to manage distressed and disturbed patients” and intended for psychiatric nurses, using Kirkpatrick’s evaluation model. The aim was to describe nurses’ reactions, learning, behaviour change and impacts resulting from this e-learning course. This dissertation comprises four papers, and the data were collected 2008-2012 from three different sources; electronic databases, an e-learning platform and psychiatric hospitals. First, a systematic literature review was conducted to understand the effectiveness of e-learning. Second, an RCT study was implemented to investigate the impact of the e-learning course on nurses’ job-satisfaction, knowledge and attitudes (N=158). Third, to complete the picture of nurses views of the e-learning course related to knowledge transfer, the nurses’ perspective was studied (N=33). Lastly, the effects of the e-learning course from nursing managers’ perspective in psychiatric hospital organisations were studied (N=28). The systematic review showed that although the nurses were satisfied with the e-learning, no effects were found in the RCT study of nurses’ job satisfaction. The RCT study showed no effects on nurses’ learning related to knowledge increase, but there was change in attitudes. The managers described the changes in the nurses’ knowledge and attitudes. Among the nurses behaviour changed with knowledge transfer from the e-learning course to practice and they pointed out development issues related to their work. The final impacts of the e-learning course revealed advantages and disadvantages of the e-learning course and its implications for nurses’ work. This dissertation provides new insight into nurses’ reactions, learning, behaviour change and impacts resulting from an e-learning course in their continuing education. In order to improve nurses’ continuing education systematic evaluation is needed, for which Kirkpatrick’s evaluation model is a useful tool.

Acceptance and Use of Information Technology among Nurses in Psychiatric Hospitals

Hoitajien informaatioteknologian hyväksyntä ja käyttö psykiatrisissa sairaaloissa Informaatioteknologian (IT) käyttö ei ole ollut kovin merkittävässä roolissa psykiatrisessa hoitotyössä, vaikka IT sovellusten on todettu vaikuttaneen radikaalisti terveydenhuollon palveluihin ja hoitohenkilökunnan työprosesseihin viime vuosina. Tämän tutkimuksen tavoitteena on kuvata psykiatrisessa hoitotyössä toimivan hoitohenkilökunnan informaatioteknologian hyväksyntää ja käyttöä ja luoda suositus, jonka avulla on mahdollista tukea näitä asioita psykiatrisissa sairaaloissa. Tutkimus koostuu viidestä osatutkimuksesta, joissa on hyödynnetty sekä tilastollisia että laadullisia tutkimusmetodeja. Tutkimusaineistot on kerätty yhdeksän akuuttipsykiatrian osaston hoitohenkilökunnan keskuudessa vuosien 2003-2006 aikana. Technology Acceptance Model (TAM) –teoriaa on hyödynnetty jäsentämään tutkimusprosessia sekä syventämään ymmärrystä saaduista tutkimustuloksista. Tutkimus osoitti kahdeksan keskeistä tekijää, jotka saattavat tukea psykiatrisessa sairaalassa toimivien hoitajien tietoteknologiasovellusten hyväksyntää ja hyödyntämistä, kun nämä tekijät otetaan huomioon uusia sovelluksia käyttöönotettaessa. Tekijät jakautuivat kahteen ryhmään; ulkoiset tekijät (resurssien suuntaaminen, yhteistyö, tietokonetaidot, IT koulutus, sovelluksen käyttöön liittyvä harjoittelu, potilas-hoitaja suhde), sekä käytön helppous ja sovelluksen käytettävyys (käytön ohjeistus, käytettävyyden varmistaminen). TAM teoria todettiin käyttökelpoiseksi tulosten tulkinnassa. Kehitetty suositus sisältää ne toimenpiteet, joiden avulla on mahdollista tukea sekä organisaation johdon että hoitohenkilökunnan sitoutumista ja tätä kautta varmistaa uuden sovelluksen hyväksyntä ja käyttö hoitotyössä. Suositusta on mahdollista hyödyntää käytännössä kun uusia tietojärjestelmiä implementoidaan käyttöön psykiatrisissa sairaaloissa.

Improving Quality of Life of Patients With Schizophrenia In Acute Psychiatric Wards

The overall goal of this study was to identify means by which the quality of life (QoL) of patients with schizophrenia could be improved in acute psychiatric wards. First, subjective QoL of patients (n=35) was explored. Second, two different QoL instruments (EuroQoL-5D, EQ-5D; Quality of Life Enjoyment and Satisfaction Questionnaire Short Form, Q-LES-Q SF) were examined. Third, patients’ (n=35) and nurses’ (n=29) perceptions of nursing interventions to support patients’ QoL were examined. Fourth, the effect of three different patient education methods on patients’ QoL (n=311) was compared. The data were collected during the period 2005-2007. Patients named health, family, leisure activities, work or study, and social relationships most frequently as their important QoL areas. It emerged that patients’ QoL was impaired. Examination of two QoL instruments showed that the EQ-5D has moderate and the Q-LES-Q SF good internal consistency. Moreover, both instruments proved to be reasonably valid and feasible for use with patients with schizophrenia. Altogether six nursing interventions which nurses use to support patients’ QoL, and which should be further developed were identified from nurses’ descriptions: interventions related to care planning, empowering interventions, social interventions, activating interventions, security interventions, and interventions to support physical health. Evaluation of different patient education methods showed that patients’ QoL improved significantly during follow-up. No significant differences between groups were found. In light of the findings it is recommended to assess QoL of patients with schizophrenia as a basis for care planning and care evaluation in clinical settings. Valid and feasible instruments should be used in this assessment. Moreover, it is recommend that nursing interventions should be further developed to better improve patients’ QoL.

Patient Seclusion and Restraint Practices in Psychiatric Hospitals - Towards Evidence Based Clinical Nursing

The overall goal of this study was to support evidence based clinical nursing regarding patient seclusion and restraint practices. This was done by ensuring professional competence through innovative learning methods. The data were collected in three phases between March 2007 and May 2009 on acute psychiatric wards. Firstly, psychiatric inpatients’ experiences and suggestions for seclusion and restraint practices were explored (n=30). Secondly, nursing and medical personnel’s perceptions of seclusion and restraint practices were explored (n=27). Thirdly, the impacts of a continuing vocational eLearning course on nurses’ professional competence was evaluated (n=158). Patients’ perspectives received insufficient attention during the seclusion and restraint process. Improvements and alternatives to seclusion and restraint as suggested by the patients focused on essential parts of clinical nursing, but were not extensively adopted. Also nursing and medical personnel thought that patients’ subjective perspective received little attention. Personnel proposed a number of alternatives to seclusion and restraint, and they expressed a need for education and support to adopt these in clinical nursing. Evaluation of impacts of eLearning course on nurses’ professional competence showed no statistical differences between an eLearning group and an education-as-usual group. This dissertation provides evidence based knowledge about the realization of seclusion and restraint practices and the impacts of eLearning course on nurses’ professional competence in psychiatric hospitals. In order to improve clinical nursing the patient perspective must be accentuated. To ensure personnel’s professional competence, there is a need for written clinical guidelines, education and support. Continuing vocational education should bring together written clinical guidelines, ethical and legal issues and the support for personnel. To achieve the ambitious goal of such integration, achievable and affordable educational programmes are required. This, in turn, yields a call for innovative learning methods.

Adoption of information technology based patient education in psychiatric nursing

The overall goal of the study was to describe adoption of information technology (IT)-based patient education (PE) developed for patients and nurses use in psychiatric nursing. The data were collected in three phases during the period 2000-2006 in a variety of psychiatric settings in Finland. Firstly, the development process of IT-based PE for patients with schizophrenia spectrum psychosis was described. Secondly, nurses’ adoption of IT-based PE and the variables explaining adoption were demonstrated. Moreover, use of daily IT-based PE in clinical practice and factors associated with use were identified and described. And thirdly, nurses’ experiences of the IT-based PE after one year clinical use were evaluated. IT-based PE program was developed in several stages based on users’ needs and it included information and multimedia applications. Altogether, almost 500 IT-based PE sessions were carried out by the nurses on the study wards and revealed nurses’ activity in educating patients using IT to vary and depend on the hospital in which they worked. Almost 80% of all the possible IT-based PE sessions involved 93 patients and 83 nurses. Less than 2% of the IT-based PE sessions were interrupted and less than 10% suffered disturbances due to the patients or external causes. Moreover, the patients whose education took more days had poorer mental status than those whose education was carried out over a shorter period. After a year’s experience, advantages and disadvantages were described by the nurses for both patients and nurses of the IT-based PE. IT-based PE can be used even on closed acute psychiatric wards with patients with serious mental health disorders. However, technology adoption requires time, and therefore, it must fit in with clinical practice. Collaboration between users and developers is needed when developing user-centered methods in the area of mental health services. Moreover, it is important to understand factors that affect IT adoption in healthcare settings. IT-based PE is one option in interactive and co-operative health care practice between patients and nurses. Therefore the staff should begin to refer patients to established, credible and well-maintained Internet sites that provide information on common psychological problems. Even if every nurse should be trained and engaged to carry out IT-based PE, by targeting the training especially for the most active nurses aids them to support the less active ones. Adoption should also be understood from a perspective that includes aspects related to the context where it is implemented and examine how and in what circumstances it works.

Coercion, Perceived Care and Quality of Life Among Patients in Psychiatric Hospitals

The goals of the study were to describe patients’ perceptions of care after experiencing seclusion/restraint and their quality of life. The goal was moreover to identify methodological challenges related to studies from the perspective of coerced patients. The study was conducted in three phases between September 2008 and April 2012. In the first phase, the instrument Secluded/ Restrained Patients’ Perception of their Treatment (SR-PPT) was developed and validated in Japan in cooperation with a Finnish research group (n = 56). Additional data were collected over one year from secluded/restrained patients using the instrument (n = 90). In the second phase, data were collected during the discharge process (n = 264). In the third phase, data were collected from electronic databases. Methodological and ethical issues were reviewed (n = 32) using systematic review method. Patients perceived that co-operation with the staff was poor; patients’ opinions were not taken into account, treatment targets collated and treatment methods were seen in different ways. Patients also felt that their concerns were not well enough understood. However, patients received getting nurses’ time. In particular, seclusion/restraint was considered unnecessary. The patients felt that they benefited from the isolation in treating their problems more than they needed it, even if the benefit was seen to be minor. Patients treated on forensic wards rated their treatment and care significantly lower than in general units. During hospitalization secluded/restrained patients evaluated their quality of life, however, better than did non-secluded/restrained patients. However, no conclusion is drawn to the effect that the better quality of life assessment is attributable to the seclusion/restraint because patients’ treatment period after the isolation was long and because of many other factors, as rehabilitation, medication, diagnostic differences, and adaptation. According to the systematic mixed studies review variation between study designs was found to be a methodological challenge. This makes comparison of the results more difficult. A research ethical weakness is conceded as regards descriptions of the ethical review process (44 %) and informed consent (32 %). It can be concluded that patients in psychiatric hospital care and having a voice as an equal expert require special attention to clinical nursing, decision-making and service planning. Patients and their family members will be consulted in plans of preventive and alternative methods for seclusion and restraint. The study supports the theory that in ethical decision-making situations account should be taken of medical indications, in addition to the patients’ preferences, the effect of treatment on quality of life, and this depends on other factors. The connection between treatment decisions and a patient’s quality of life should be evaluated more structurally in practice. Changing treatment culture towards patients’ involvement will support daily life in nursing and service planning taking into account improvements in patients’ quality of life.

Nurses’ Acceptance of an Internet-Based Support System in The Care of Adolescents with Depression

The overall goal of the study was to describe nurses’ acceptance of an Internet-based support system in the care of adolescents with depression. The data were collected in four phases during the period 2006 – 2010 from nurses working in adolescent psychiatric outpatient clinics and from professionals working with adolescents in basic public services. In the first phase, the nurses’ anticipated perceptions of the usefulness of the Internet-based support system before its implementation was explored. In the second phase, the nurses’ perceived ease of computer and Internet use and attitudes toward it were explored. In the third phase, the features of the support system and its implementation process were described. In the fourth phase, the nurses’ experiences of behavioural intention and actual system use of the Internet-based support were described in psychiatric out-patient care after one year use. The Technology Acceptance Model (TAM) was used to structure the various research phases. Several benefits were identified from the nurses’ perspective in using the Internet-based support system in the care of adolescents with depression. The nurses’ technology skills were good and their attitudes towards computer use were positive. The support system was developed in various phases to meet the adolescents’ needs. Before the implementation of the information technology (IT)-based support system, it is important to pay attention to the nurses’ IT-training, technology support, resources, and safety as well as ethical issues related to the support system. After one year of using the system, the nurses perceived the Internet-based support system to be useful in the care of adolescents with depression. The adolescents’ independent work with the support system at home and the program’s systematic character were experienced as conducive from the point of view of the treatment. However, the Internet-based support system was integrated only partly into the nurseadolescent interaction even though the nurses’ perceptions of it were positive. The use of the IT-based system as part of the adolescents’ depression care was seen positively and its benefits were recognized. This serves as a good basis for future IT-based techniques. Successful implementations of IT-based support systems need a systematic implementation plan and commitment from the part of the organization and its managers. Supporting and evaluating the implementation of an IT-based system should pay attention to changing the nurses’ work styles. Health care organizations should be offered more flexible opportunities to utilize IT-based systems in direct patient care in the future.

Yhteistoiminnallinen hoitotyö

Opinnäytetyön tarkoituksena on selvittää, mitä on yhteistoiminnallinen hoitotyö. Opinnäyteytössä määritellään yhteistoiminnallisen hoitotyön käsite ja sisältö. Työssä on tarkasteltu yhteistoiminnallisuutta selittäviä käsitteitä. Opinnäytetyö on osa laajempaa projektia, jossa on mukana HUS:n Psykiatriakeskus, Helsingin kaupungin terveyskeskuksen psykiatrian osasto sekä Helsingin ammattikorkeakoulu Stadia. Projekin tarkoituksena on kehittää psykiatrisen hoitotyön käytäntöä yhteistoiminnalliseksi. Opinnäytetyö on tehty soveltaen systemaattisen kirjallisuuskatsauksen mallia. Aineisto koostuu yhteensä kolmestatoista lähteestä. Mukana on väitöskirjoja, pro gradu- tutkielmia sekä tutkimusartikkeleita, jotka on julkaistu hoitotieteellisissä julkaisuissa. Kirjallisuuskatsauksen tuloksina nousi esiin, että yhteistoiminnallinen hoitotyö on potilaan ja hoitajan välistä yhteistyötä. Se on potilaslähtöinen tapa tehdä hoitotyötä, jossa otetaan huomioon potilaan voimavarat ja tarpeet. Potilas on vastuullinen osallistuja. Jokainen hoitoon osallistuva määrittelee hoidon tavoitteen ja kukin osallistuu siihen tasavertaisesti. Yhteistoiminnallisuuteen kuuluu molemminpuolinen luottamus. Kaikki osapuolet vaikuttuvat toisistaan ja dialogisuuden avulla voidana löytää uusia näkökulmia hoitoon. Yhteistoiminnallisuus on uusi käsite hoitotyössä. Sen ymmärtäminen ja toteutuminen vaatii hoitotyön tekijöiden perehdyttämistä syvällisemmin aiheeseen. Se vaatii potilaalta mahdollisuutta osallistua voimavarojensa mukaan hoitoon. Yhteistoiminnallisen hoitotyön avulla voidaan motivoida potilasta aktiivisempaan rooliin omassa hoidossaan.

Personal Liberty in Psychiatric Care - Towards Service User Involvement

This study explores personal liberty in psychiatric care from a service user involvement perspective. The data were collected in four phases during the period 2000-2006 in psychiatric settings in Finland. Firstly, patient satisfaction and factors associated with user involvement were studied (n = 313). Secondly, patients’ experiences of deprivation of their liberty were explored (n = 51). Thirdly, an overview on patients’ options for lodging complaints was conducted, and all complaints (n = 4645) lodged in Finland from 2000 to 2004 were examined. Fourthly, the effects of different patient education methods on inpatients’ experiences of deprivation of liberty were tested (n = 311). It emerged that patients were quite satisfied, but reported dissatisfaction in restrictions, compulsory care and information dissemination. Patients experienced restrictions on leaving the ward and on communication, confiscation of property and coercive measures as deprivation of liberty. Patients’ experienced these interventions to be negative. In Finland, the patient complaint process is complicated and not easily accessible. In general, patient complaints increased considerably in Finland during the study period. In psychiatric care the number of complaints was quite stable and complaints led more seldom to consequences. An Internet-based patient education system was equivalent with traditional education and treatment as usual in supporting personal liberty during hospital care. This dissertation provides new information about the realization of patients' rights in psychiatric care. In order to improve patients' involvement, systematic methods to increase personal liberty during care need to be developed, the procedures for patients lodging complaints should be simplified, and patients' access to information needs to be ensured using multiple methods.

Sairaanhoitajaopiskelijoiden ohjattujen käytännön harjoittelujen aikana ilmenneet eettiset ongelmat

Ethical problems occurring during the practical training period of Finnish nursing students The present study focused on nursing students adopting the professional code of conduct during their supervised practical training. The study was carried out in two phases. During the first phase, the objective was to survey ethical problems occurring in practical training as well as how these problems are detected and resolved by nursing students and their supervisors at different stages of their studies. In the second phase, the capability of the nursing students about to graduate to detect and resolve ethical problems was described and analyzed. The students’ capacity for self-instruction, independent search for information as well as factors related to teaching of ethics were determined within this phase. Further, an extensive literature review was carried out to complement the study. Thus, the main objective of the thesis was to make suggestions for the development of the teaching of ethics and supervision in nursing studies and in practice. In the first part of the empirical phase (2002–2005), the views of the nursing students (n =18) were clarified with themed open essay questions. Furthermore, the views of the supervising nurses (n = 115) were established by utilizing a series of themed questions and group interviews. During the second phase (2006–2007), the data for the analyses were collected from nursing students in their graduating stage (n = 319) by a national Internet-based questionnaire. The results of the first phase were examined with contentanalysis and those of the second phase both statistically and by using content analysis. Ethical problems occurring during supervised practical training were typically connected to a patient or a client, a member of the nursing staff or to a student, while solutions were connected to preparation and the action to solve the problem in question. Ethical dilemmas were classified as legal, ethical comportment and uncertainty problems as well as personal and institutional ones. The solutions for these problems were further grouped as based on facts, instructor/staff/member/specialist or patient/client/relative. The results showed that although the nursing students about to graduate had detected many ethical problems both independently as well as together with the nursing staff during every practical training period, they were able to resolve only few of them. Ethical problems were most frequently encountered during training in psychiatric nursing. On the grounds of their own impressions, the nursing students stated that their ability to detect and solve ethical problems improved during their training period. The primary factors related to this enhancement of their skills were teaching and the students’ readiness for selfinstruction. Gender, orientation of the studies and age were observed to be the most important among the underlying factors influencing the capability to detect and solve ethical problems as well as to engage in self-instruction. Based on the results obtained, suggestions for development as well as topics for further studies are presented through teaching of professional ethics and supervision during practical training.

Patient education to support self-management of patients with mental illness

This study explores areas which need to be improved to develop the quality of patient education to support self-management of patients with mental illness in psychiatric hospitals. The study was conducted in five phases during the period 2000 – 2007. First, patients‘ (n = 313) satisfaction with patient education were investigated. Second, patients' (n = 51) experiences of patient education were explored. Third, a national survey was conducted to investigate realisation of patient education from the staff (n = 55) viewpoint. Fourth, outcomes of patient education were investigated by evaluating the impacts of different patient education methods on patients‘ (n = 311) attitudes towards medication, knowledge level and importance of information. Fifth, patients‘ (n = 16) perceptions of different patient education methods were explored. Patients reported poor satisfaction with patient education (Phase I), and they have considerable need to receive information during their hospital stay (Phase II). Described by staff, the content of patient education covered almost all informational areas investigated. However, discrepancies related to the realisation of patient education were found. (Phase III.) Evaluation of different patient education methods indicate that patients derived benefits from structured patient education with supportive methods (Phase IV) and patients also perceived that these methods supported their information receiving (Phase V). In order to improve the quality of patient education to support self-management of patients with mental illness patient education should be systematically and individually provided to all patients by using different educational methods. Realisation of this should be ensured by providing written instructions, improving nurses‘ knowledge and skills as well ensuring operating conditions.

Det vårdande samtalet

Syftet med studien är att utgående från ett vårdvetenskapligt perspektiv utveckla en teori för det vårdande samtalet, speciellt som det gestaltar sig i den psykiatriska vårdkontexten. Avsikten är primärt att tillföra den kliniska vårdvetenskapen kunskaper om hur samtal mellan vårdare och patienter kan lindra lidande. Studien tar sin utgångspunkt i ett vårdvetenskapligt perspektiv som har sina rötter i Katie Erikssons caritativa vårdteori. Den metodologiska ansatsen är hermeneutisk. Forskningen har genomförts i form av fem delstudier som publicerats i internationella vetenskapliga tidskrifter. Metoderna som använts är: 1) en fenomenologisk hermeneutisk ansats för att beskriva det vårdande samtalet som det skildras av sjuksköterskor och patienter i intervjuer, 2) kvalitativ forskningssyntes av studier rörande begreppen närvaro, beröring och lyssnande, 3) kvalitativ forskningssyntes av studier rörande begreppen narrativer, berättelser, mening och förståelse, 4) en hermeneutisk ansats inspirerad av Paul Ricoeurs hermeneutik för att undersöka hur psykiatriska patienter i samtal med vårdare berättar om lidande, 5) en hermeneutisk analys av de etiska fundamenten för ett vårdande samtal i ljuset av Paul Ricoeurs etik. Resultaten från de fem delstudierna formar utgångspunkten för en teori för hur ett vårdande samtal kan tolkas. Teorin består av tre aspekter, den relationella, den narrativa, och den etiska, vilka undersökts i delstudierna. I den relationella aspekten kan vårdaren genom att lyssna, beröra och vara med-varande skapa en närvaro. Genom vårdarens gåva av sin närvaro, d v s att vara tillgänglig och till förfogande med hela sitt väsen, visas möjligheten till ett möte med patienten utan roller och inlärda repliker. När patienten kan besvara denna gåva med en inbjudan att dela något av sin värld, skapas en förbindelse i vilken patienten kan dela sitt lidande och sin värld med vårdaren. Den narrativa aspekten gestaltas i samtalet som patientens berättelse om sitt lidande. Lidandeberättelsen tar sin början i den fasad som patienten skyddar sig mot lidande och skam med. Frågan om varför patienten lider banar vägen både för en ny förståelse av fasaden och också för upplevelsen av en vändpunkt när fasadens skydd överges, vilket leder till en upplevelse av mening-i-lidandet. Artikuleringen av berättelsens poäng, mening-med-lidandet innebär dels en ny tolkning och förståelse för de förhållanden som rådde vid berättelsens början, dels de nya preferenser för hur patienten vill leva sitt liv som vuxit fram. Den etiska aspekten gestaltas i en relation som på grund av patientens lidande och vårdarens medlidande är asymmetrisk, men omfattar en ömsesidig respekt. Genom caritas skapar vårdaren ett utrymme där patienten kan (åter)upprätta sin självaktning, autonomi och sitt ansvar och därmed skapa möjligheter för ett gott liv.