Vidrörd av livet i dödens närhet - att varda som människa och vårdare i vårdandets gemenskap

The overall aim of the study is to create a theory model of “becoming” as a human being and health care provider in the caring communion at the end-of-life. The theoretical perspective of the study is caring science as it is developed at Åbo Academy University in Finland outlined in Eriksson's theory of caritative caring with focus on caring ethics. The thesis consists of four sub-studies reported as scientific articles and a summary section. The study has an overarching hermeneutic research approach. The sub-studies I-IV are reinterpreted from viewpoint of the overall question. Empirical assumptions could then be discerned from the substance of the four substudies, which raised questions. The answers to these questions were sought in dialogue with selected texts by Kierkegaard and resulted in a theory model. The theory model results in following theses: 1. To “become” as a human being is to remain in an endless guilt. Guilt is a form of love. It is guilt that give strength and willingness to act in love and mercy when caring for patients at the end-of-life. The guilt as love allows becoming as a human being to be at home in love and mercy. 2. The human being’s courage is characterized as the willingness to obtain contact with the life of fellow human beings. This courage develops over time to stand for itself, with a foundation of belief in human beings, and resulting in a selfless, loving way to help the patients grieve and reconcile at the end-of-life. 3. To be “touched” can be illustrated as an inner awakening; an inner movement towards consciousness for the examination of the love for one another, and to love unselfishly. 4. The human being’s evolution in its own understanding of life occurs in the care of another human being who is at the end-of-life, as well as to be at home in ethos, love and mercy. Becoming in this context means that the human being evolves to become responsive to the heart's inner voice; an inner strength and joy which opens to the eternal and holy. 5. To overcome external obstacles is characterized as serving human beings in a selfless love; a caring in love that has requirements that need to be expressed by what is true, beautiful and good for patients at the end-of-life. An awareness and understanding of what it means to become as a human being and health care provider in caring community can help health care providers to easily focus on the patient.

Very preterm infants in Finland - Use of health care services and economic consequences during the first five years of life

The aim of this thesis was to study the health, the hospitalisations, and the use of communal health care services in very preterm children during the first five years of life. In addition, the effect of very preterm birth and prematurity-related morbidities on the costs of hospitalisations, other health care services and the cost per quality adjusted life years (QALY) were studied. This population-based study included all very preterm children (gestational age (GA) <32 weeks or birth weight<1501g, N=2 064) and full-term controls (GA 37+0−41+6, N=200 609) born in Finland during 2000-2003. The data sources included national register data, costing data from the participating hospitals and parental questionnaires. This study showed that most very preterm infants born in Finland survived without prematurity-related morbidities diagnosed during the first years of life. They required relatively little hospital care after the initial discharge, which accounted for the vast majority of the total four-year hospitalisation costs. However, a minority of children born very preterm later developing morbidities had a long initial length of stay and more re-admissions and outpatient visits during the five-year follow-up period. In particular, the number and costs of non-emergency outpatient visits were considerable in individuals with prematurity-related morbidities. The need and costs of hospitalisations decreased clearly with each follow-up year, even in individuals with morbidities. The health-care related costs during the fifth year of life in children born very preterm without prematurity-related morbidities were close to the costs in infants born healthy at term. The cost per QALY of 19,245 € was at an acceptable level already by four years of age in the very preterm population as a whole. Prematurity-related later morbidities and decreasing GA increased the costs per QALY. As the initial hospital stay accounted for a great majority of the total four-year costs, and the costs of hospitalisation decreased with each follow-up year, the cost per QALY is likely to decrease with age. In conclusion, the majority of costs arising after the initial hospitalisation were associated with morbidities related to prematurity. Therefore offering high-quality neonatal care to prevent later morbidities in very preterm survivors has a long-term impact on the cost per QALY. In addition, this study indicates that when estimating the costs of prematurity after the first year of life, one should calculate not only the hospitalisation costs, but also other costs for social welfare services, primary care, and therapies, as these exceed the hospitalisation costs in very preterm infants during the fifth year of life.

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.

Patient-perceived health-related quality of life during recovery after total hip arthroplasty – a 6-month follow-up study

Potilaiden käsitys terveyteen liittyvästä elämänlaadusta lonkan tekonivelleikkauksen jälkeisenä toipumisaikana – kuuden kuukauden seurantatutkimus Tässä kaksivaiheisessa seurantatutkimuksessa tarkasteltiin potilaiden käsitystä terveyteen liittyvästä elämänlaadusta lonkan tekonivelleikkauksen jälkeisenä toipumisaikana. Tutkimuksen ensimmäisessä vaiheessa tarkoituksena oli sekä kuvailla potilaiden kokemuksia potilaana olosta, saamastaan hoidosta ja terveyspalveluorganisaatiosta että analysoida aikaisempien tutkimusten perusteella leikkauksen tuloksia potilaan kannalta. Toisessa vaiheessa tarkoituksena oli arvioida potilaiden kokemaa elämänlaatua leikkauksen jälkeen, ja sitä vaikuttivatko primaaritulokset (fyysinen toimintakyky, kipu, ahdistus) tai taloudelliset seuraukset (potilaiden itsensämaksamat kustannukset, palvelujen käyttö) terveyteen liittyvään elämänlaatuun. Tutkimuksen tavoitteena oli löytää mahdolliset kriittiset ajankohdat tai tekijät, jotka saattavat hidastaa toipumista ja siten huonontaa potilaiden elämänlaatua. Tätä tietoa voidaan käyttää hoitotyössä kun suunnitellaan sopivaa hoitoa ja tukea toipumisajalle. Tutkimuksen ensimmäisessä vaiheessa primaarileikkaukseen tulevat potilaat (n = 17) kuvailivat teemahaastatteluissa kokemuksiaan kahdesti leikkauksen jälkeen. Haastatteluaineisto analysoitiin induktiivisella sisällönanalyysilla. Lisäksi 17 tutkimusartikkelista analysoitiin deduktiivisella sisällönanalyysilla leikkauksen tuloksia potilaalle, tuloksiin vaikuttavia tekijöitä ja käytetyt tutkimusmetodit. Toisessa vaiheessa primaari- tai revisioleikkaukseen tulevat potilaat (n = 100) arvioivat leikkauksen tuloksia kuuden kuukauden ajan leikkauksen jälkeen: terveyteen liittyvää elämänlaatua, primaarituloksia ja taloudellisia seurauksia. Aineisto kerättiin erilaisilla mittareilla: Sickness Impact Profile, Finnish Version, Stait-Trait Anxiety Inventory, ja Numeric Rating Scale. Lisäksi käytettiin tätä tutkimusta varten tehtyjä kyselylomakkeita: Fyysinen toimintakyky-mittari, Palvelujen käyttö-mittari ja Kustannusmittari. Tutkimuksen toiseen vaiheen tulokset analysoitiin tilastollisilla menetelmillä. Potilaiden terveyteen liittyvä elämänlaatu parani ja kipu lievittyi leikkauksen jälkeen ja fyysinen toimintakyky lisääntyi toipumisaikana. Positiivisista muutoksista huolimatta potilaat kokivat ahdistusta samassa määrin kuin ennen leikkaustakin. Palvelujen käyttö vaihteli toipumisajan kuluessa ja potilaiden maksamissa kustannuksissa oli suuria vaihteluita. Fyysisen toimintakyvyn lisääntyminen ja kivun lieveneminen paransivat terveyteen liittyvää elämänlaatua. Sen sijaan huonompi elämänlaatu toipumisaikana oli yhteydessä suurempaan palvelujen käyttöön, kun taas kustannuksilla ei ollut yhteyttä elämänlaatuun. Potilaiden ominaispiirteet tulisi ottaa enemmän huomioon suunniteltaessa sopivaa leikkauksenjälkeistä hoitoa ja tukea. Potilaat tarvitsevat yksilöllisiä ohjeita, sillä monet taustatekijät (esim. ikä, sukupuoli, preoperatiivinen kipu, siviilisääty, ja leikkaustyyppi) vaikuttavat toipumiseen.

The Quality of Paediatric Nursing Care - Children’s Perspective

Hoitotyön laatu - lasten näkökulma Tämän kolmivaiheisen tutkimuksen tarkoituksena oli kuvailla lasten odotuksia ja arviointeja lasten hoitotyön laadusta sekä kehittää mittari kouluikäisille sairaalassa oleville lapsille laadun arviointiin. Perimmäisenä tavoitteena oli lasten hoitotyön laadun kehittäminen sairaalassa. Ensimmäisessä vaiheessa 20 alle kouluikäistä (4-6v) sekä 20 kouluikäistä (7-11v) lasta kuvailivat odotuksiaan lasten hoitotyön laadusta. Aineisto kerättiin haastattelulla ja lasten piirustusten avulla, sekä analysoitiin sisällön analyysilla. Lasten odotukset lasten hoitotyön laadusta kohdistuivat hoitajaan, hoitotyön toimintoihin ja ympäristöön, fyysinen ympäristö korostui piirustuksissa. Ensimmäisen vaiheen tulosten, aikaisemman kirjallisuuden sekä Leino-Kilven “HYVÄ HOITO” mittarin pohjalta kehitettiin “Lasten Hoidon Laatu Sairaalassa” (LHLS) mittari ja testattiin sen psykometrisiä ominaisuuksia tutkimuksen toisessa vaiheessa. Mittaria kehitettiin ja testattiin kolmen vaiheen kautta. Aluksi asiantuntijapaneeli (n=7) arvioi mittarin sisältöä. Seuraavaksi mittari esitestattiin kahdesti kouluikäisillä sairaalassa olevilla lapsilla (n=41 ja n=16), samassa vaiheessa myös viiden lastenosaston hoitajat (n=19) yhdessä arvioivat mittarin sisältöä sekä 8 lasta. Lopuksi mittaria testattiin kouluikäisillä lapsilla (n=388) sairaalassa sekä hoitajat (n=198) arvioivat mittarin sisällön validiteettia. Mittarin kehittämisen aikana päälaatuluokkien: hoitajan ominaisuudet, hoitotyön toiminnot ja hoitotyön ympäristö Cronbachin alfa kertoimet paranivat. Pääkomponentti analyysi tuki mittarin hoitotyön toimintojen ja ympäristön alaluokkien teoreettista rakennetta. Kolmannessa vaiheessa “Lasten Hoidon Laatu Sairaalassa” (LHLS III, versio neljä) mittarilla kerättiin aineisto Suomen yliopistosairaaloiden lastenosastoilta kouluikäisiltä 7-11 -vuotiailta lapsilta (n=388). Mittarin lopussa lapsia pyydettiin lisäksi kuvailemaan kivointa ja ikävintä kokemustaan sairaalahoidon aikana lauseen täydennystehtävänä. Aineisto analysoitiin tilastollisesti sekä sisällön analyysilla. Lapset arvioivat fyysisen hoitoympäristön, hoitajien inhimillisyyden ja luotettavuuden sekä huolenpidon ja vuorovaikutustoiminnot kiitettäviksi. Lapset arvioivat hoitajien viihdyttämistoiminnot kaikkein alhaisimmiksi. Lapsen ikä ja sairaalantulotapa olivat yhteydessä lasten saamaan tiedon määrään. Lasten kivoimmat kokemukset liittyivät ihmisiin ja heidän ominaisuuksiinsa, toimintoihin, ympäristöön sekä lopputuloksiin. Ikävimmät kokemukset liittyivät potilaana oloon, tuntemuksiin sairauden oireista sekä erossaoloon, hoitotyön fyysisiin toimintoihin sekä ympäristöön. Tutkimuksen tulokset osoittavat lasten olevan kykeneviä arvioimaan omaa hoitoaan ja heidän näkökulmansa tulisi nähdä osana koko laadun kehittämisprosessia parannettaessa laatua käytännössä todella lapsilähtöisemmällä lähestymistavalla. “Lasten Hoidon Laatu Sairaalassa” (LHLS) mittari on mahdollinen väline saada tietoa lasten arvioinneista lasten hoitotyön laadusta, mutta mittarin testaamista tulisi jatkaa tulevaisuudessa

Applying collective intelligence to idea evaluation at the front end of innovation

The study focuses on the front end of innovation process. Due to changes in innovation policies and paradigms customers, users and shopfloor employees are becoming increasingly important sources of knowledge. New methods are needed for processing information and ideas coming from multiple sources more effectively. The aim of this study is to develop an idea evaluation tool suitable for the front end of innovation process and capable of utilizing collective intelligence. The study is carried out as a case study research using constructive research approach. The chosen approach suits well for the purposes of the study. The constructive approach focuses on designing new constructs and testing them in real life applications. In this study a tool for evaluating ideas emerging from the course of everyday work is developed and tested in a case organization. Development of the tool is based on current scientific literature on knowledge creation, innovation management and collective intelligence and it is tested in LUT Lahti School of Innovation. Results are encouraging. The idea evaluation tool manages to improve performance at the front end of innovation process and it is accepted in use in the case organization. This study provides insights on what kind of a tool is required for facilitating collective intelligence at the front end of innovation process.

Survival and Quality of Life among Patients with Severe Lower Extremity Peripheral Arterial Disease

Lower extremity peripheral arterial disease (PAD) is associated with decreased functional status, diminished quality of life (QoL), amputation, myocardial infarction, stroke, and death. Nevertheless, public awareness of PAD as a morbid and mortal disease is low. The aim of this study was to assess the incidence of major lower extremity amputation due to PAD, the extent of reamputations, and survival after major lower extremity amputation (LEA) in a population based PAD patient cohort. Furthermore, the aim was to assess the functional capacity in patients with LEA, and the QoL after lower extremity revascularization and major amputation. All 210 amputees due to PAD in 1998–2002 and all 519 revascularized patients in 1998–2003 were explored. 59 amputees alive in 2004 were interviewed using a structured questionnaire of QoL. Two of each amputee age-, gender- and domicile-matched controls filled in and returned postal self-administered QoL questionnaire as well as 231 revascularized PAD patients (the amount of these patients who engaged themselves to the study), and one control person for each patient completed postal self-administered QoL questionnaire. The incidence rate of major LEA was 24.1/100 000 person-years and it was considerably high during the years studied. The one-month mortality rate was 21%, 52% at one-year, and the overall mortality rate was 80%. When comparing the one-year mortality risk of amputees, LEAs were associated with a 7.4-fold annual mortality risk compared with the reference population in Turku. Twenty-two patients (10%) had ipsilateral transversions from BK to AK amputation. Fifty patients (24%) ended up with a contralateral major LEA within two to four amputation operations. Three bilateral amputations were performed at the first major LEA operation. Of the 51 survivors returning home after their first major LEA, 36 (71%) received a prosthesis; (16/36, 44%) and were able to walk both in- and outdoors. Of the 68 patients who were discharged to institutional care, three (4%) had a prosthesis one year after LEA. Both amputees and revascularized patients had poor physical functioning and significantly more depressive symptoms than their controls. Depressive symptoms were more common in the institutionalized amputees than the home-dwelling amputees. The surviving amputees and their controls had similar life satisfaction. The amputees felt themselves satisfied and contented, whether or not they lived in long-term care or at home. PAD patients who had undergone revascularizations had poorer QoL than their controls. The revascularized patients’ responses on their perceived physical functioning gave an impression that these patients are in a declining life cycle and that revascularizations, even when successful, may not be sufficient to improve the overall function. It is possible that addressing rehabilitation issues earlier in the care may produce a more positive functional outcome. Depressive symptoms should be recognized and thoroughly considered at the same time the patients are recovering from their revascularization operation. Also primary care should develop proper follow-up, and community organizations should have exercise groups for those who are able to return home, since they very often live alone. In rehabilitation programs we should consider not only physical disability assessment but also QoL.

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.

Singing and dancing the rhythm of life : oral poetry in the Abanyole community of Kenya

A statement presented at the oral defence of a Dr. Phil. dissertation on Saturday 26th October 2002, University of Helsinki