Soins palliatifs en établissements médico-sociaux: Caractéristiques et spécificités [Palliative Care in Nursing Homes: Characteristics and Specificities].

Elderly patients in palliative situations residing in a nursing home present characteristics and specificities that clearly distinguish them from patients with advanced cancer. Besides the difficulty to define a precise prognosis, their many comorbidities, their communication difficulties because of cognitive disorders, their high sensitivity to primary and secondary effects of drugs render their management a real challenge for physician and caregivers. Accompanying these patients at the end of their life also raises many ethical problems, especially when they are no longer able to express their wishes and have not previously expressed advance directives.

Care related pain in rehabilitation after orthopedic trauma: An exploratory study with qualitative data.

OBJECTIVE: Care related pain (CRP) is generally under-estimated and rarely studied in rehabilitation as well as in general medecine. Beliefs about pain influence psychological distress, adjustment to pain and physical disability. In this sense, perceptions of CRP could limit recovery. This exploratory study aims to understand patients' and caregivers' subjective perceptions and beliefs about CRP. PATIENTS AND METHODS: Questionnaires about CRP were submitted to members of the interdisciplinary team of a rehabilitation hospital and to patients with musculoskeletal complaints (cross-sectional design). Twenty patients were also individually interviewed (qualitative data). Four topics were addressed: frequency of CRP, situations and procedures causing CRP, beliefs about CRP and means used to deal with CRP. RESULTS: Seventy-five caregivers and 50 patients replied to the questionnaire. CRP is a very common experience in rehabilitation and it is recognized by both groups. Generally, the situations causing CRP reflect the specificity of rehabilitation (mobilization...) and are similarly perceived by patients and caregivers, with patients considering them as more painful. Beliefs about CRP are clearly different from those usually associated with pain. Both groups point out the utilitarian and the inevitable character of CRP. They differ on that, that patients had a more positive view about CRP. They associate it more often with progress and see it as acceptable at least until a certain limit. They are also able to perceive the richness of means used by physiotherapists to help them coping with CRP. CONCLUSION: Our data may suggest new keys to motivate patient to be active in rehabilitation for example in choosing carefully arguments or words which may fit theirs' beliefs about CRP, or in using various means to manage CRP. Promoting the use of relational competences with chronic pain patients and of a patient-centred approach may also be a concern in training caregivers.

Challenges to patient-centred care in a general internal medicine context: findings from an exploratory study

Introduction. If we are to promote more patient-centred approaches in care delivery, we have to better characterize the situations in which being patient-centred is difficult to achieve. Data from professionals in health and social care are important because they are the people charged with operationalizing patient-centred care (PCC) in their daily practice. However, empirical accounts from frontline care providers are still lacking, and it is important to gather experiences not only from doctors but also from the other care providers. Indeed, experiences from different professions can help inform our understanding of patient care, which is expected to be both patient-centred and collaborative. Methods. This study was based on the following research question: What factors make the provision of PCC difficult to achieve? Sample and setting. A purposeful sampling technique was used, allowing for a series of choices about the participants and their professional affiliation. Because patient-centredness is the focus, 3 professions appeared to be of special interest: general internists, nurses and social workers. The study was undertaken in the General Internal Medicine Division of a teaching hospital located in a North American context. Data Collection. To answer the research question, a methodological approach based on a theory called phenomenology was chosen. Accordingly, semi-structured interviews were used since they generate understanding of the meanings different individuals have of their lived world. Interviews with 8 physicians, 10 nurses and 10 social workers were eventually conducted. Data analysis. An inductive thematic analysis was employed to make sense of the interview data. Results. The thematic analysis allowed identifying various types of challenges to PCC. Although most of the challenges were perceived by all three groups of professionals, they were perceived to a different degree across the professions, which likely reflected the scope of practice of each profession. The challenges and their distribution across the professions are illustrated in Table 1. Examples of challenges are provided in Table 2. Discussion. There is a tension between what is supposed to be done - what stands in the philosophy of patient -centredness - and what is currently done - the real life with all the challenges to PCC. According to some participants' accounts, PCC clearly risks becoming a mere illusion for health care professionals on which too great pressures are imposed.

Necessitats dels familiars de pacients amb càncer

El càncer produeix un impacte a la família en totes les seves esferes, la família ha de modificar les seves rutines familiars i adoptar nous rols. En el moment del diagnòstic del càncer, a cada família hi ha una persona que assumeix el rol de cuidador principal. Aquest cuidador és el que s’ocupa del malalt a casa i fa d’enllaç entre la família i l’equip sanitari. En front del càncer, la família i el cuidador tenen un conjunt de dubtes, d’inquietuds, de preocupacions que s’acaben traduint en necessitats. L’equip sanitari i Infermeria especialment ha d’atendre aquestes necessitats i ajudar a satisfer-les. Objectiu: L’objectiu principal d’aquest treball es descriure quines són les necessitats que presenten la família i el cuidador dels pacients oncològics. Metodologia: Es va dur a terme una revisió de la literatura entre setembre del 2013 i maig del 2014. Es va utilitzar la base de dades Pubmed, a més de pàgines web i llibres. Es van obtenir un total de 75 fonts, 56 en angles, 18 en espanyol i 1 en català. Resultats: La bibliografia agrupa les necessitats de les famílies i els cuidadors en 7 grans categories: físiques, psicològiques i emocionals, socials, de informació i formació, econòmiques, de transport i espirituals. Pel que fa a necessitats més especifiques, algunes de les més freqüents són tenir informació sobre el pronòstic del malalt, assegurar-se de que l’equip sanitari està donant la millor atenció possible al malalt. Sembla haver-hi una relació entre el grau de no satisfacció de les necessitats i el grau d’ansietat i depressió en la família i el cuidador. Els autors consultats no coincideixen en afirmar si la majoria del les necessitats es veuen satisfetes o no. Conclusions: La família i el cuidador d’un pacient amb càncer també han de rebre atenció per part dels professionals. En moltes ocasions la família treu importància a les seves necessitats per tal de que l’equip sanitari es centri només en el malalt. Infermeria té un paper fonamental en detectar les necessitats dels familiars i cuidadors i en ajudar a satisfer-les, de manera que la família estigui en les millors condicions possibles per cuidar del malalt. Paraules clau: Càncer, família, cuidador, necessitats familiars, rol d’Infermeria

Au sortir de l'hôpital, comment renforcer la continuité de la prise en charge médicale [Discharge from hospital: how to improve continuity of medical care?].

Early readmission is the major success indicator of the transition between hospital and home. Patients admitted with heart failure reach a 20% rate. Potentially avoidable readmissions, defined as unpredictable and related to a known condition during index hospitalization, represent the improvement margin. For these latter, implementation of specific interventions can be effective. Complex interventions on transition, including several modalities and seeking to encourage patient autonomy seem more effective than others. We describe two models: a pragmatic one developed in a regional hospital, and a more complex one developed in a university hospital during the LEAR-HF study. In both cases, it is imperative to work on "medical liability": should it extend beyond discharge up to the threshold of the private practice?

”Kyllähän nyt pitäs olla jo semmonen aika, että pääsis niin kö keskustelemhan näistä asioista.” Tutkimus lappilaisten sotavankien, partisaanien uhrien ja huutolaisten elämänkulusta, voimavaroista, terveydestä ja sairauksista

Research into the course of life, mental stamina and health status of wartime prisoners, victims of Soviet partisan attacks, and paupers in Finnish Lapland The basis of this research comprised the issues raised during the interviews conducted in my work as a general practitioner in Lapland, regarding factors that have possibly affected the life stories and health conditions of Lappish people who had lived through the war as war prisoners, victims of partisan attacks, or paupers. The purpose of the study was to describe how the different life phases and experiences emerged from the interviewees’ stories and to identify their mental stamina. Another goal was to make observations on their health status, in which the main emphasis became to address mental symptoms. The cohort consisted of elderly Finns who lived in Lapland during the war and experienced war imprisonment, pauperism, or became victims of partisan attacks. All three groups consisted of 12 interviewees. The interview transcripts were read several times and then investigated using the content analysis methods applicable to the material. The research methodology was based on building awareness and understanding. Thematic tagging and data coding were used as structured analysis tools. In all three groups most of the interviewees clearly identified their mental stamina, the most fundamental of which were home, family and work. The war prisoners’ injuries and nervous sensibility symptoms had been shown in earlier studies on war prisoners, and on this basis they had been granted disability pensions. However, many of them had suppressed their traumatic experiences and mental difficulties, and they could not talk about these issues until at the time of these interviews held at old age. Four of them still suffered from a post-traumatic stress disorder. The victims of Soviet partisans had had to carry their mental load alone for decades before the cruel ravages on civilians in remote areas of Lapland became publicly known. Most of them still had disturbing nervous sensibility symptoms. Four interviewees had a post-traumatic stress disorder, and in addition to these, the mental symptoms of one had developed into a post-traumatic stress disorder during old age. Many of the interviewees who had been left paupers remembered their childhood as filled with grief and feelings of inferiority, and had nightmares relating to their wartime experiences. Yet none of them suffered from post-traumatic stress disorder. The results showed that the exceptional suffering caused by the war, the wartime imprisonment and the devastating attacks by Soviet partisans had led especially to mental difficulties. These were left almost completely unnoticed in the post-war conditions, and the war victims were unable to seek help on their own. Based on the results, our health care for the elderly should focus on familiarization with the individual experiences and life stories of each elderly person. This can facilitate geriatric diagnostics and individual therapy planning. Empathic familiarization with the life experiences of the elderly may strengthen their mental stamina and improve the quality of successful aging.

Kinship foster care: a study from the perspective of the of the caregivers, the children and the child welfare workers

In the last twenty years, in most Western countries, kinship foster care has become an integral part of childcare systems,growing progressively with regard to the numbers of children involved and relative weight as a care resource within thesystem; indeed, in some countries it is even more common than other placement options, such as non-kinship foster careand residential care. Research on this phenomenon is still recent and scarce, and there are few programmes targeting thispopulation. In this article we present the results of a descriptive study on kinship foster care in the city of Barcelona,including information and data from the different stakeholders involved. From a quality of life research perspective weanalyze the perceptions, evaluation and expressed satisfaction of caregivers, children and practitioners from the specialistChild and Adolescent Teams (EAIAs) responsible for the study and follow-up of kinship foster care cases. The researchpresented results are in line with those of current research in this field, and lays the basis for the future development ofkinship foster care programmes

Factors affecting foster care breakdown in Spain

La ruptura del acogimiento familiar se ha definido como aquella situación en la que alguna de las partes implicadas causa una terminación de la intervención antes de haber alcanzado los objetivos establecidos en el plan de caso. Este trabajo presenta un estudio llevado a cabo en una muestra española de 318 casos cerrados de niños que fueron acogidos en familia ajena y extensa. Los datos se obtuvieron a través de la revisión exhaustiva de los expedientes de protección y acogimiento, complementada conentrevistas a los técnicos encargados de cada caso. La tasa de ruptura del conjunto de la muestra fue de 26,1%, si bien fuesignificativamente diferente en familia extensa (19,7%) que en familia ajena (31,2%). Los resultados de este estudio indican que las variables relacionadas con la ruptura dependen de la modalidad del acogimiento, en familia ajena o extensa. En el primer caso destacamos las variables relacionadas con las características del niño, especialmente los problemas de conducta y escolares, con especial relevancia en el grupo de 9-12 años, y el haber estado en acogimiento residencial previamente. En cambio, en extensaresulta más importante la problemática en los padres (prisión, salud mental) y el tener una medida de tutela. También el hecho de que se realice el acogimiento tras pasar por hogares de acogida resulta trascendental. Finalmente, la disponibilidad de recursos económicos e incluso los estudios de los acogedores parecen ser variables relacionadas con la ruptura de la acogida

Acogimiento en familia extensa: un estudio desde la perspectiva de los acogedores, de los niños y niñas acogidos y de los profesionales que intervienen. = Kinship foster care: a study from the perspective of the caregivers, the children and the child welfare workers

Desde hace aproximadamente dos décadas, en la mayoría de los países occidentales, los acogimientos en familia extensa han entrado a formar parte de los sistemas de protección infantil, siguiendo una evolución creciente en cuanto a número y peso especifico como recurso de acogimiento. Las investigaciones sobre este fenómeno son aún recientes y escasas como también lo son los programas dirigidos a esta población. En el presente artículo presentamos los resultados de un estudio descriptivo sobre los acogimientos en familia extensa en la ciudad de Barcelona, donde se recogen datos de los principales agentes implicados en este fenómeno. Desde la perspectiva de los estudios de la calidad de vida se analizan las percepciones, evaluaciones, y satisfacción expresada, por parte de los acogedores, los niños/as acogidos y los profesionales de los Equipos de Atención a la Infancia y Adolescencia (EAIA) que se encargan del estudio y seguimiento de estos acogimientos. La investigación presenta unos resultados acordes con los estudios que actualmente se realizan en este ámbito y sienta las bases para el despliegue futuro de programas dirigidos a los acogimientos en familia extensa

Customer Driven Service Development – Technology-based Care and Services for the Elderly

The objective of this master’s thesis was to examine technology-based smart home devices and services. Topic was approached through basic theories, transaction cost theory and resource-based view in order to build basis for this thesis. Conceptual framework was discussed by means of networks, value networks and service systems which provide a useful framework for service development. The needs of the elderly living at home were discussed in order to find out which technology-based services could be used to satisfy the needs. Segmentation and need data collected previously during proactive home visits was exploited and additionally a survey targeted to experts and professionals of social and health care sector was done to verify the needs. Finally, the results of the survey were analyzed using quality function deployment method to figure out the most important and suitable service offerings for the elderly. As a conclusion of analysis, social media and monitoring services are the most useful technology-based services. However, traditional home services will still maintain their necessity too.

Den vårdande och helande bilden: möten med bildkonst i vårdandets värld

Denna vårdvetenskapliga avhandling syftar till att avtäcka och belysa en vårdande och helande dimension vid existentiellt lidande patienters möten med bildkonst inom vårdkontext. Kunskapssökandet sker i två studier. Den första (studie I) är en ikonografi sk tolkning av konstnären Matthias Grünewalds (ca 1460–1528) senmedeltida altarskåpsmålningar. I studien uttolkas lidandets uttryck och narrativa budskap samt symboliska gestaltningar av vårdande och helande i valda delar av detta s.k. Isenheimaltares bildprogram. Tolkningen utgår från rekonstruktionen av altarskåpets ursprungskontext, det medeltida Isenheimklostret, där svårt sjuka och döende patienter vårdades. I studie två (II) fortsätter sökandet i den moderna hospicevårdens kontext med hjälp av en kvalitativ intervjustudie som utforskar patienters meningsskapande vid möten med självvald bildkonst (oljemålningar och akvareller av fi nländska konstnärer som donerats till det sjukhus där intervjustudien gjordes). Forskningsansatsen är inspirerad av Hans-Georg Gadamers (1901–2002) hermeneutik. Vidare används några nyare tolkningsteoretiska ansatser inom bildkonstens område. Forskningens tolkningsresultat visar att bildkonsten har potentialer såväl på ett miljöestetiskt plan som på en djupare individuell symbolnivå. Som designkomponent i vårdmiljöns rumsliga gestaltning bygger bildkonsten in estetiska, etiska och andliga kvaliteter utifrån tidsmässiga och kulturella koder. I den medeltida klostervårdens kontext sammanföll bildkonstens dekorativa betydelse med andliga och helande syften. När det gäller självvalda konstverk i den moderna vårdkontexten bidrar de till det enskilda patientrummets atmosfär på ett unikt sätt utifrån patientens personlighet och behov. På en fördjupad mötesnivå, i samspel med bildens symboliska funktion, sker en inlevelsemässig förfl yttning in i bildens värld. Betraktarens inlevelse aktiveras till en transcenderande rörelse som går bortom det faktiska rummets och den reella tidens gränser. Vid resor i konstens bildvärld spelas minnesvärda händelser upp från det förgångna, men även framtiden kommer betraktaren till mötes. I en existentiell livssituation söker människan i konstverkets bildinnehåll efter symbolisk mening som kan ge svar på lidandets frågor. Bilderna iscensätter då helande motbilder som utgör korrektiv i symboliska former när olika existentiella förluster hotar. När livet förbleknats av sjukdom besvarar bildvärlden den lidandes blick med lysande violer som blommar upp, ger livskraft och bekräftar personens värdighet mitt i det förvissnande människolivet. När ångest och otrygghet nalkas inbjuds betraktaren till besök i landskap som utvidgar sjukhusrummets väggar mot hemgårdens trygghet. Där livet hotas av förgänglighet tar bildvärlden människan med sig till naturens eviga återfödelse. Upplevelsen av att vara delaktig i ett större och heligt sammanhang öppnar vägen ut ur lidandets avskurenhet. I medeltidens vårdkontext erbjöd den sakrala bilden en kollektiv och helande Symbolon som genom sin representationskraft synliggjorde det osynliga. Vid bildmöten i den moderna hospicevårdens kontext var det naturteman som gläntade på dörren till ”det hemliga rummet i djupet av hjärtat”. Forskningen antyder att även om meningsskapandet i ett bildmöte är avhängigt tidsepok, betraktarens förförståelse och kulturella kontext samt typen av bilder kan bildsymboliken, generellt förstådd som den saknade formen eller det saknade livssammanhanget, framvisa en helande och hoppingivande ordning i lidandets kaos.

Competence in intensive and critical care nursing - development of a basic assessment scale for graduating nursing students

Intensive and critical care nursing is a speciality in its own right and with its own nature within the nursing profession. This speciality poses its own demands for nursing competencies. Intensive and critical care nursing is focused on severely ill patients and their significant others. The patients are comprehensively cared for, constantly monitored and their vital functions are sustained artificially. The main goal is to win time to cure the cause of the patient’s situation or illness. The purpose of this empirical study was i) to describe and define competence and competence requirements in intensive and critical care nursing, ii) to develop a basic measurement scale for competence assessment in intensive and critical care nursing for graduating nursing students, and iii) to describe and evaluate graduating nursing students’ basic competence in intensive and critical care nursing by seeking the reference basis of self-evaluated basic competence in intensive and critical care nursing from ICU nurses. However, the main focus of this study was on the outcomes of nursing education in this nursing speciality. The study was carried out in different phases: basic exploration of competence (phase 1 and 2), instrumentation of competence (phase 3) and evaluation of competence (phase 4). Phase 1 (n=130) evaluated graduating nursing students’ basic biological and physiological knowledge and skills for working in intensive and critical care with Basic Knowledge Assessment Tool version 5 (BKAT-5, Toth 2012). Phase 2 focused on defining competence in intensive and critical care nursing with the help of literature review (n=45 empirical studies) as well as competence requirements in intensive and critical care nursing with the help of experts (n=45 experts) in a Delphi study. In phase 3 the scale Intensive and Critical Care Nursing Competence Scale (ICCN-CS) was developed and tested twice (pilot test 1: n=18 students and n=12 nurses; pilot test 2: n=56 students and n=54 nurses). Finally, in phase 4, graduating nursing students’ competence was evaluated with ICCN-CS and BKAT version 7 (Toth 2012). In order to develop a valid assessment scale of competence for graduating nursing students and to evaluate and establish the competence of graduating nursing students, empirical data were retrieved at the same time from both graduating nursing students (n=139) and ICU nurses (n=431). Competence can be divided into clinical and general professional competence. It can be defined as a specific knowledge base, skill base, attitude and value base and experience base of nursing and the personal base of an intensive and critical care nurse. Personal base was excluded in this self-evaluation based scale. The ICCN-CS-1 consists of 144 items (6 sum variables). Finally, it became evident that the experience base of competence is not a suitable sum variable in holistic intensive and critical care competence scale for graduating nursing students because of their minor experience in this special nursing area. ICCN-CS-1 is a reliable and tolerably valid scale for use among graduating nursing students and ICU nurses Among students, basic competence of intensive and critical care nursing was self-rated as good by 69%, as excellent by 25% and as moderate by 6%. However, graduating nursing students’ basic biological and physiological knowledge and skills for working in intensive and critical care were poor. The students rated their clinical and professional competence as good, and their knowledge base and skill base as moderate. They gave slightly higher ratings for their knowledge base than skill base. Differences in basic competence emerged between graduating nursing students and ICU nurses. The students’ self-ratings of both their basic competence and clinical and professional competence were significantly lower than the nurses’ ratings. The students’ self-ratings of their knowledge and skill base were also statistically significantly lower than nurses’ ratings. However, both groups reported the same attitude and value base, which was excellent. The strongest factor explaining students’ conception of their competence was their experience of autonomy in nursing. Conclusions: Competence in intensive and critical care nursing is a multidimensional concept. Basic competence in intensive and critical care nursing can be measured with self-evaluation based scale but alongside should be used an objective evaluation method. Graduating nursing students’ basic competence in intensive and critical care nursing is good but their knowledge and skill base are moderate. Especially the biological and physiological knowledge base is poor. Therefore in future in intensive and critical care nursing education should be focused on both strengthening students’ biological and physiological knowledge base and on strengthening their overall skill base. Practical implications are presented for nursing education, practice and administration. In future, research should focus on education methods and contents, mentoring of clinical practice and orientation programmes as well as further development of the scale.

Exploring Customer-Oriented Service Offerings in Public Health: Developing Integrated Health Care Services for Rural Areas

Väestön ikääntyminen pakottaa yhteiskunnan ja julkisen terveydenhuollon muutoksiin. Jotta ikääntyvien ihmisten kotona asuminen voidaan mahdollistaa, palvelujärjestelmän pitää mukautua muuttuvaan tilanteeseen. Tämän diplomityön tarkoituksena on tunnistaa asiakaslähtöisiä lähellä asiakasta tarjottavia palvelukokonaisuuksia. Tutkimuksen teoreettinen viitekehys muodostuu asiakasarvon luomisesta ja palvelutarjoamista. Tarkasteluryhmänä on Etelä-Karjalan alueen 60–90-vuotiaat ja käytetty aineisto on kerätty vastaajilta postitse lähetetyllä kyselyllä. Tutkimus on eksploratiivinen ja tulosten tulkinnassa on hyödynnetty määrällisen tutkimuksen ja verkostoanalyysin menetelmiä. Työn keskeisimmät tulokset ovat tunnistetut asiakassegmentit ja heidän tarpeidensa pohjalta muodostetut palvelupaketit. Tulokset indikoivat asiakkaiden tarpeita ja tuloksia on analysoitu myös tuottajan näkökulmasta. Empiiristen tulosten lisäksi teoriaviitekehystä on kehitetty eteenpäin, jotta palvelukeskeiset teoriat voidaan ymmärtää yritysten näkökulman lisäksi asiakkaan näkökulmasta.

I hälsans spelrum : lek på vårdandets scen

With caring science as its foundation and by means of the perioperative dialogue, the intended contribution and overall aim of this present thesis is to describe what play is and could be in the caring reality, an ideal model. The perioperative dialogue is the nurse anaesthetists’ pre-, intra- and post-operative dialogues with the children they care for in connection with anesthesia. The thesis is composed according to Schopenhauer’s notion that the road to science presupposes the world seen as performances, and has an all-pervading hermeneutic approach. The performances of the thesis are: the performance of all performances, the empirical performance, the transcendental performance and the universal performance. The performance of all performances originates in the theoretical perspective of the thesis and describes what play and its characteristics are. This performance is realized through the hermeneutic interpretation of the etymology and original meaning of the word play along with texts from caring science, philosophy, anthropology and the history of religion. The empirical performance originates in four empirical studies where caring is organized as a perioperative dialogue. In study I, the material was collected with the help of participating observations and semi-structured interviews, in study II, with the help of the critical incident method and in study III, with the help of conversation interviews. In study IV, play develops into a clinical caring science research method. The research participants consist of children with special needs, children with a pronounced fear of anaesthesia, parents of children with severe autism and nurse anaesthetists. The empirical performance relates in what way play manifests in a perioperative child context by interpreting the results from the empiric in the light of the characteristics of play. The transcendental performance is enacted in the playhouse of health and presents a picture of the essence of play, the playing. In the playhouse of health, the light, winged movement of play is actualized when what was previously too difficult, too heavy and pinioned instead is as easy as anything. The eye of love and compassion knows the art of deciphering the secret script where the Other’s holiness resides, even if mere glimpses of it appear. The universal performance depicts three caring acts where the entrance consists of entering play, the ideal of which is realized in the unmasked openness face to face, that which protects the playing human being against encroachment and an unwanted audience. In the second caring act, entering play plays on to the finely-tuned interplay between human beings in the winged play of beauty and dignity. In the third caring act, the world’s deepest plays are staged on the stage of caring, in the sense that the innermost being of each individual, the universal will joins in and allows individuals to live as playing human beings who are at home with themselves and the world. The captivating, graceful and friendly play works from within itself, as long as it illumined by the light of claritas can play undisturbed on the stage of caring where it – like an unclouded mirror of its own ideal watches over children’s health.