Kokemuksia itsemääräämisoikeudesta ikääntyneiden ja vammaisten palveluissa : "Mä ihan hengitän ja elän"

Opinnäytetyön tarkoituksena oli selvittää, millaisena itsemääräämisoikeus koetaan vammaisten palveluasumisyksikössä ja kotihoidon asiakasohjauksessa sekä mistä asioista kokemus itsemääräämisoikeudesta koostuu asiakas- ja työntekijänäkökulmista. Tavoitteena oli myös nostaa esille kehitysehdotuksia. Opinnäytetyö oli kvalitatiivinen tutkimus ja se toteutettiin teemahaastatteluilla. Tulokset analysoitiin aineistolähtöisellä sisällön analyysillä käyttäen teemoittelua ja luokittelua. Opinnäytetyön tulokset osoittivat, että asiakkaat kokivat itsemääräämisoikeutensa pääsääntöisesti hyväksi, mutta kehityskohteitakin löytyi. Asiakkaan kokivat itsemääräämisoikeutensa koostuvan itsenäisestä päätöksenteosta, yksilöllisen palvelun saannista, luottamussuhteesta avustavien työntekijöiden kanssa, kuulluksi tulemisesta, kunnioituksesta, tasa-arvosta, osallisuudesta sekä omien elämänarvojen huomioiduksi tulemisesta. Myös työntekijöiden suhtautumisella, asenteilla ja sitoutumisella koettiin olevan vaikutusta itsemääräämisoikeuden toteutumiseen. Työntekijöillä oli samanlaisia ajatuksia asiakkaiden itsemääräämisoikeudesta. Työntekijät kokivat asiakkaan itsemääräämisoikeuden koostuvan asiakkaan kuulemisesta, osallisuudesta ja itsenäisestä päätöksenteosta, ihmisarvon kunnioituksesta sekä hoitotahdosta. Työntekijät kokivat asiakkaan itsemääräämisoikeuteen vaikuttaviksi asioiksi myös asiaan suhtautumisen sekä asenteet, aikataulut ja erilaiset työtavat. Myös rajoittamistoimenpiteet turvallisuuden takaamiseksi nousi itsemääräämisoikeuteen vaikuttavaksi tekijäksi. Kohdeorganisaatiot voivat kehittää asiakkaidensa itsemääräämisoikeutta mahdollistamalla entistä paremmin asiakkaiden kuulemisen sekä osallisuuden palvelutarpeen arvioinnissa ja palvelujen toteuttamiseen liittyvissä seikoissa. Itsemääräämisoikeuden rajoittamiseen asiakkaan turvallisuuden takaamiseksi ei vielä tällä hetkellä ole saatavilla riittävästi menettelyohjeita. Työntekijöiden riittävällä osaamisella, yhteisesti sovituilla arvoilla, työtavoilla ja linjauksilla on vaikutusta asiakkaiden kokemaan itsemääräämisoikeuteen. Asiakkaan itsenäinen päätöksenteko ja kuuleminen tulee mahdollistaa sekä tarjota siihen tarvittava tuki. Hoitotahdon avulla asiakkaan itsemääräämisoikeus pystytään turvaamaan myös tulevaisuudessa.The purpose of this study was to investigate how clients and personnel at the housing services for people with disabilities and domiciliary care client instructor department experience self-determination and which areas that experience consists of. The aim was also to provide improvement suggestions. The study was qualitative in nature and based on interviews. The data were analysed through content analysis. The results show that clients chiefly experienced their self-determination to be good, but there were some areas for development. Clients felt that their self-determination consists of decision-making, individualized service, a bond of trust between the client and per-sonnel, the way in which the client is being heard, as well as respect, equality, participa-tion and how the client’s life values are being acknowledged. Clients felt that the per-sonnel's work methods, approach and commitment influence the realization of their self-determination. The personnel felt that a client’s self-determination consists of being heard, participation, decision-making, as well as respect and living will. The personnel also felt that their approach, schedule and different work methods affect the client’s self-determination. The personnel thought that restraint measures have an impact on the client’s sense of self-determination. The results indicate that the studied organizations can develop their clients’ self-determination. It is important to focus on how clients are being heard and how they can participate in the service they receive. It is also important to standardize personnel's work methods and offer enough guidelines. With a living will, a client’s self-determination can be secured

Long-term changes in the incidence of childhood epilepsy. A population study from Finland

BackgroundThe incidence of childhood epilepsy has changed during the past decades, but it is unclear whether it increased or decreased.MethodsChanges in drug-treated childhood epilepsy between 1968 and 2012 were evaluated using the Finnish nationwide register of all children, aged ≤ 15 years, on antiepileptic drugs (AEDs) prescribed for the treatment of epilepsy. The first registered entitlement to full-refundable AEDs was used as a proxy for newly diagnosed epilepsy. Incidence densities were calculated as ratios of annual new cases per 100,000 person-years in each calendar year during 1968 to 2012.ResultsThe annual incidence density of newly treated childhood epilepsy increased from 35 in the 1960s to 87 per 100,000 person-years in the 1990s and decreased thereafter to 61 per 100,000 person-years. Since 1996, the incidence density decreased 1–2% per year in children aged ConclusionThe incidence of drug-treated childhood epilepsy from the late 1960s to the early 1990s distinctly increased. The reasons for the increase are not fully understood but may include increasing ascertainment through improved diagnosis and a wider acceptance of AED treatment. Since the 1990s, a slight decline can be seen, probably reflecting the recent improvement in child health and safety.</p

Child neurology services for children with epilepsy in Finland

ObjectiveThe aim of the study was to describe healthcare organization, training of and needs for child neurologists, patient accessibility to services, and treatment paths of children with epilepsy in Finland.MethodsData were collected from all geographic healthcare areas over Finland on training capacity in child neurology, number and density of child neurologists, and availability and accessibility of child neurological services. Data sources included the National Physician Register, Central Register of Healthcare Professionals of National Supervisory Authority for Welfare and Health, and phone and email inquiries to the heads of public healthcare units.ResultsThe overall density of child neurologists in Finland was 11.9/100 000 children aged 0‐15 years or 8402 children per child neurologist (in 2018). There is a remarkable geographic variation, from 7.1 in northern Finland to 15.6 in the metropolitan area. However, waiting times for the treatment are virtually the same all over the country. According to the Finnish current practice recommendation from the year 2013 and again 2020, children with any first nonfebrile or complicated febrile epileptic seizure are invariably admitted to hospital for evaluation. Children with simple febrile seizures are recommended to be treated as outpatients by general practitioners or by experienced pediatricians.SignificanceChild neurology services are today well provided and organized in Finland. While there is geographic variation in the number of child neurologists, the accessibility is virtually the same all over the country. A gap between the numbers of specialists at near‐to‐retire age and those in training is a challenge.</p

Remission in epilepsy: How long is enough?

Objective: The International League Against Epilepsy (ILAE) has proposed to expand the definition of remission to 10 years seizure-free with the last 5years off antiepileptic drugs (AEDs). We examined if a 10-year remission is needed to predict the lowest recurrence risk.Methods: The population-based study cohort consisted of 148 patients with new-onset childhood epilepsy living in the catchment area of Turku University Hospital. They were prospectively followed for 44years (median). Patients in first remission were prospectively followed for the duration of remission or possible relapse at 2years in remission with the last year without antiepileptic drugs (AEDs), at 5years in remission with the last 2years without AEDs, and at 10years with the last 5years without AEDs. For comparison of the proportions of relapsed patients within each remission category exact Clopper Pearson 95% confidence intervals were used.Results: The magnitude of the relapse rate estimates off AEDs did not significantly improve when remission increased from 2 years (2YR) to 5 years (5YR) and further to 10 years (10YR). However, 10YR was a more sensitive measure of no relapse than 2YR. Among patients with remission on or off AEDs, the ability to predict lower relapse rate increased markedly from 2 to 5years, and again from 5 to 10years. The risk of relapse was virtually the same estimated after 2YR off AEDs as after 10YR on or off AEDs, except for patients with generalized epilepsy whose 2YR off AEDs was a weaker predictor than 10YR on or off AEDs.Significance: Given the modest differences in relapse rates between the 5years seizure-free with last 2years off medications definition and the 10years seizure-free with last 5years off medications, and the adverse impact of not being considered in remission, we propose that a return to the 5-year definition may be warranted.</p

Long-term mortality of patients with West syndrome

Objective: To study long-term survival and mortality among patients with Westsyndrome.Methods: The study population included all children born in 1960–1976 and treated forWest syndrome in three tertiary care hospitals in Helsinki, Finland. The participantswere prospectively followed for five decades for survival. Death data were derivedfrom the National Causes of Death Register of the Population Register Center ofStatistics Finland.Results: During follow-up, 102 (49%) of 207 patients had died at the mean age of19 years. The mean overall annual mortality rate was 15.3 per 1,000 patient-years.The rates ranged from 18.2 per 1,000 after 10 years to 17.2 per 1,000 after 20 yearsand 15.4 per 1,000 patient-years after 40 years of follow-up. One fourth (25%) had diedby 17.2 (95% CI 11.8–22.7) years and 50% by 48.6 (95% CI 38.5–NA) years of follow-up.Etiology at onset was symptomatic in 87% patients and cryptogenic in 13%; 6 of the latter26 patients later turned out to be symptomatic. The mean annual mortality ratewas 3.7 per 1,000 for 4 patients with cryptogenic etiology and 17.6 per 1,000 for thosewith symptomatic etiology. The hazard of death was fivefold in patients with symptomaticetiology versus cryptogenic etiology. The overall autopsy rate was 73%. Pneumoniawas the most frequent cause of death (46%). All patients who died ofpneumonia had symptomatic etiology. SUDEP occurred in 10 patients and was themost common epilepsy-related cause of death (10%).Significance: Risk of excess death of participants with West syndrome is not limited toearly age but continues into adulthood, particularly in those with symptomatic etiology,and leads to death in half the cases at around 50 years of age. Measures should bedirected to prevent pneumonia, the most common overall cause, and SUDEP, themost frequent seizure-related cause, of death.</p

Overrepresentation of epilepsy in children with type 1 diabetes is declining in a longitudinal population study in Finland

Aim The aim was to determine temporal changes in increased risk of epilepsy among children with type 1 diabetes.Methods The incidence of epilepsy up to age 15 in children with prior type 1 diabetes was analysed regarding the general Finnish child population using data from the Finnish nationwide hospital register. Type 1 diabetes and epilepsy were identified by the International Classification of Diseases 9th and 10th revision codes. Epilepsy was defined according to ILAE guidelines. The analyses were done using negative binomial regression models. Results Preceding type 1 diabetes was diagnosed in 6162 (0.91%) of the 679 375 general children population. Incidence rate of new-onset epilepsy among children with type 1 diabetes was higher than in controls (140 vs 82 per 100 000 person-years at risk, respectively). The excess incidence diminished with time (P = 0.033 for diabetes to birth cohort interaction), from over twofold in birth cohort 1990-1993 [incidence rate ratio 2.2 (95% CI 1.7-2.9)] to 40% in birth cohort 1998-2000 [1.4 (95% CI 1.001-1.9)]. Conclusion In a population study setting, children with type 1 diabetes had an increased, but slowly declining risk of developing epilepsy. Future research may elucidate the underlying mechanisms.</p

Toisen asteen koulutusvalinnan yhteys nuorten ruokatottumuksiin – STRIP–projekti

Tutkimuksessa selvitettiin miten nuorten oma toisen asteen koulutusvalinta on yhteydessä ruokatottumuksiin. Tutkittavat (n=310, joista 175 tyttöä ja 153 poikaa) ovat osallistuneet sydänterveyden edistämiseen tähtäävään STRIP – interventiotutkimukseen. Ruoankäyttöä selvitettiin ruokapäiväkirjojen (13 kk- 19 v) ja frekvenssikyselyn (16-19 v) avulla. Nuoret jaettiin 1) lukiolaisiin ja 2) toisen asteen ammatillisessa oppilaitoksessa opiskeleviin. Lukiolaiset söivät aamupaloja säännöllisemmin kuin ammatillisessa oppilaitoksessa opiskelevat. Lukiolaiset söivät myös kasviksia sekä hedelmiä ja marjoja säännöllisemmin kuin ammatillisessa oppilaitoksessa opiskelevat ja jo yläkouluikäisinä noin 30- 35 g enemmän kuin ammatillisen koulutuksen valinneet. Toisen asteen koulutuksen aikana ero kasvoi 60-70 grammaan. Koulutusvalinnalla ei ollut yhteyttä syömiskertojen lukumäärään tai runsasenergisten, mutta vähän ravintoaineita sisältävien ruokien käyttömääriin. Terveys- ja ravitsemuskasvatus on tärkeää vielä toisen asteen koulutuksessa ja erityisesti ammatillisen koulutuksen valinneiden keskuudessa

Sense of coherence predicts adolescent mental health

Background: Strong sense of coherence (SOC) has been shown to predict good mental health among adults whereas its predictive value in adolescence is unclear. This life-course oriented prospective study explores whether SOC predicts mental health in a three-year follow-up.Methods: The data is part of the ongoing 'Finnish Family Competence Study' launched in 1986 in southwestern Finland (baseline n = 1287). The outcome variable was adolescents mental health at 18 years of age, measured on the Development and Well-Being Assessment (DAWBA) scale. The main predictor was Antonovsky's SOC score (1987) measured at the age of 15. A total of 498 adolescents were included in the present analyses. Poisson regression was used by univariate and multivariable models using the parents' age and socioeconomic status and adolescents' gender as covariates.Results: Multivariable analysis showed that a one-unit increase in SOC decreased the relative risk of a DAWBAbased diagnosis by 4 % (RR [95% CI] 0.96 [0.94-0.98], p Limitations: Typical of very long follow-up, as in our study of nearly two decades, a substantial proportion of the original population-based cohort was lost to follow-up weakening the representability of our cohort.Conclusions: Sense of coherence is a useful and clinically sensitive tool to predict mental health in adolescence. The easily administered, coping-oriented SOC questionnaire is an appropriate instrument in screening for adolescents who would benefit from supportive measures to strengthen their mental well-being.</div