8 research outputs found

    Erratum: Identifying underlying medical causes of pediatric obesity: Results of a systematic diagnostic approach in a pediatric obesity center (PLOS ONE (2020) 15:5 (e0232990) DOI: 10.1371/journal.pone.0232990)

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    The affiliation for the twelfth author is incorrect. Erica L. T. van den Akker is not affiliated with #2 and #3 but with #1: Obesity Center CGG, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands and #4: Division of Endocrinology, Department of Pediatrics, Erasmus MC-Sophia Children’s Hospital, University Medical Center Rotterdam, Rotterdam, The Netherlands

    SATEENKAAREN PÄÄSTÄ LÖYTYY KULTAA: Tutkimus suomalaisesta saattohoidosta

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    Saattohoitoon erikoistuneet hoitokodit muovaamassa suomalaista hoitokulttuuria Tutkimuksessa tarkastellaan kuolevan potilaan hoitamista suomalaisissa saattohoitokodeissa. Saattohoitokodit aloittivat toimintansa Suomessa 1980-luvulla. Tutkimuksessa tuodaan esille ensimmäisten saattohoitokotien perustamiseen ja suunnitteluun liittyvää lähihistoriaa Pirkanmaan Hoitokodista Tampereelta, Terhokodista Helsingistä ja Karinakodista Turusta. Tutkimus on ensimmäinen suomalaista saattohoitokulttuuria käsittelevä hoitotieteellinen tutkimus. Työssä on käytetty etnografista tutkimusmetodia. Monipuolista ja laajaa tutkimusaineistoa on analysoitu ja tulkittu mm. kuva-analyysiä soveltaen. Saattohoitoympäristöjen visuaalinen viestintä ja symboliikka tulee voimakkaasti esille tutkimuksen kokonaisuudessa. Tutkimuksessa kysytään, mitä saattohoitokodeissa tapahtuu, mitä tehtäviä kuoleman kynnyksellä on, millaista hoitamista saattohoitoyhteisöt arvostavat, millaisia ympäristöjä saattokodit ovat sekä mitä potilaat ja heidän omaisensa saattovaiheen hoidolta odottavat. Kiinnostava kysymys on, millaisen muodon brittiläisestä hospice-ideologiasta lähtöisin oleva hoitomuoto suomalaisissa saattohoitokodeissa saa. Hoidon keskiössä potilas ja perhe Suomalaisen saattohoidon keskiössä on potilas ja hänen perheensä. Avainsana olemiselle ja tekemiselle on yhdessä. Saattohoidon peruslähtökohtana on potilaan fyysisten, psyykkisten sosiaalisten, henkisten ja hengellisten ulottuvuuksien tarpeista lähtevä hoito. Perheelle ja potilaalle pyritään antamaan erilaisia mahdollisuuksia käydä läpi ja hyväksyä kuoleman väistämättömyys, mutta keskeneräisenäkin on oikeus kuolla. Potilaan yksityisyys on saattohoitokodeissa pyhä ja loukkaamaton. Rakkautta, lämpöä, myötätuntoa ja tukea potilas saa läheisiltään ja hoitohenkilöstöltä. Työyhteisöön kuuluvat oleellisena osana myös vapaaehtoistyöntekijät. Saattohoidon toimintakulttuuri on monimuotoista. Arjen traditioihin kuuluvat juhlat, erilaiset värikkäät tapahtumat ja tilaisuudet. Kuoleman lähellä elämää kannattaa juhlia. Saattohoitokodeissa myös tavallinen arki saa pyhäpäivän arvon. Saattohoidon tarkoituksena on tukea, vahvistaa ja rauhoittaa kuolemaa lähestyvää potilasta ja hänen läheisiään. Tukemisen muodot ovat konkreettisen hoitoavun ja tukitoiminnan lisäksi kuuntelemista, ystävällisiä sanoja ja erilaisia sanattomia viestejä. Suoraa sanallista puuttumista ihmisen yksityisiin, sisäisiin prosesseihin vältetään, sillä saattohoitoajattelun mukaan jokaisella tulee olla oikeus rakentaa kuolemantalonsa itse. Rauhallinen kuolema on saattohoidon keskeinen tavoite. Perhettä tuetaan myös potilaan kuoleman jälkeen. Hoitoympäristö puhuttelee ja viestii kuolemasta Saattohoitokotien julkiset tilat tekevät vaikutuksen kävijöihin. Jo pelkkä ympäristö puhuttelee ja pysähdyttää. Joillekin hoitokoti on kuin kokemus taivaan esikartanoista , joitakin se ahdistaa. Jokaisessa kolmessa saattohoitokodissa on mm. viherpuutarha ja jossakin muodossa toteutettu vesielementti. Taustaäänenä voi olla vain hiljalleen soliseva, virtaava vesi. Saattohoitokotien symboliikka pakottaa ajattelemaan kuolemaa. Kuolemasta viestivät mm. palavat kynttilät ja lasi- tai keramiikkalinnut. Saattohoitokodissa kuolema on aina läsnä. Hoitohenkilöstön voimana oma työnäky ja sitoutuminen saattohoitoideologiaan Saattohoidon parissa työskenteleviä yhdistää halu auttaa ihmistä ja tehdä jotakin todella tärkeää. Oma työnäky, lähimmäisenrakkaus ja kuolevan hoitamiseen liittyvän työn haasteellisuus auttavat jaksamaan. Työyhteisön voimana on sekä perussuomalainen niskavuorelaisuus että sitoutuminen yhteiseen asiaan, saattohoitoideologiaan. Tutkimusajankohtana haastateltu henkilökunta oli ollut saattohoitotyössä hoitokotien perustamisesta lähtien ja siksi yhteisvastuuseen ja kuolevan hoitamiseen voimallisesti sitoutuneita. Ensimmäisten suomalaisten saattohoitokotien omaksuma, inhimilliseen ja hyvään hoitamiseen pyrkivä kuolevan potilaan hoito ja hoitokulttuuri on yllättävää monimuotoisuudessaan ja toiminnallisuudessaan. Siihen kuuluu olennaisena osana myös varsinaiseen saattohoitoyhteisöön kuulumattomien henkilöiden tuki ja osallisuus, mikä merkitsee suomalaisittain, että veljeä ei jätetä. Lähitulevaisuudessa tapahtuva hoitajakunnan sukupolvenvaihdos tuo eteen uusia kysymyksiä sekä hoidon arvoista, hoitokulttuurista että kuolevan hoitamisen käytännön järjestämisestä terveydenhuollon eri alueilla.The care of dying patients in the form of hospice care began in Finland in the late 1980s, when the first of Finland s four hospices was opened. The present ethnography aimed at generating information on the substance and nature of Finnish hospice care. The research is a monograph in the field of health sciences, and the data were collected using the ethnographic method in three Finnish hospices. The ethnography depicts care culture, care philosophy, care environment, the traditions and different types and dimensions of hospice care from the perspective of nursing science. The purpose of the research was to depict and highlight terminal care provided in hospices and to contribute to understanding of the care of dying patients. The ideology adopted in Finnish hospices stems from that used in British hospices. While bearing in mind the premises underlying the hospice ideology, the research task does not involve comparisons between care cultures. Hospice care has received much praise from patients and their significant others as an exemplar of good care. The research addresses the components and essence of good care in Finnish hospices. Data were collected mainly in a hospice in Tampere (1996-2000), but also in the two other Finnish hospices in Helsinki and Turku. Altogether 35 persons (n=35) were interviewed. The research also drew on interview data from hospice care patients (n=6), collected by the researcher in 1995. Interviewees were selected from the hospices in a naturalistic way during the research process depending on the preliminary analyses, the researcher s conclusions and the new questions brought about by the research process. The field work and data collection phases were guided by four relatively broad research questions, formulated at the beginning of the research. The research explores the substance of hospice care in Finnish nursing facilities adhering to the hospice ideology; the care ideology represented by Finnish hospice care; the elements embodied in the care environment; and the traditions and rituals of end-of-life care in hospices. The research addresses the tasks involved when a p! atient approaches death, the values of the hospice community and the expectations of patients and their significant others from hospice care. The research environment and communication in hospice care were also examined through images and image analysis. The interview data were analyzed using content analysis and image analysis using the method depicted by Anttila (1998). The research questions were found to be relevant with respect to the purpose of the study. The results showed that hospice care pays individual attention to patients and is family-centred. Hospice care is based on the dying patient s physical, psychological, social and spiritual needs. Personalized pain management and good basic nursing are an essential component of good care. The dying patient s family is emphasized as a care resource. The family is supported by contacting them in different ways after the patient s death. The hospice community is comprised of an interdisciplinary team of experts, strongly committed to the hospice ideology, and of hospice volunteers, essential to the operations. The cultural versatility and subtlety of hospice care stem from collaboration with various actor groups through cultural programmes and visits. Celebrations and a festive atmosphere are part of the hospice s everyday life. The support and involvement of those who are not members of the actual hospice community are an essential element of hospice care. The hospice day centre, run by hospice volunteers, has had a crucial role in the development of Finnish hospice culture. The centre is also open to home hospice patients and their families. Much attention is paid to the furnishings and aesthetic qualities of hospices. Hospices aim to provide patients with a comfortable, home-like and safe care environment, good care and pain relief and the possibility to experience a peaceful death. As care environments, hospices send out strong messages and are marked by symbols of death. Communication in hospice care aims at soothing the patients and significant others, but also involves a great deal of direct and non-verbal messages that compel to consider the ever present death. The Finnish hospices are characterized by charity, compassion and the traditional Finnish Niskavuori ethos

    Hemodynamic Effects of Pulmonary Arterial Hypertension-Specific Therapy in Patients With Heart Failure With Preserved Ejection Fraction and With Combined Post- and Precapillay Pulmonary Hypertension

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    Background: Drugs approved for pulmonary arterial hypertension have been considered for patients with heart failure with preserved ejection fraction and combined post- and precapillary pulmonary hypertension (Cpc-PH). We aimed to study changes in cardiac volumes, cardiac load and left ventricular (LV) filling pressures in patients with heart failure with preserved ejection fraction and Cpc-PH in response to pulmonary arterial hypertension-specific treatment. Methods and Results: In this prospective study, 23 patients with heart failure with preserved ejection fraction and Cpc-PH underwent right-heart catheterization, including acute provocation testing (fluid loading and inhaled nitric oxide) and cardiac MRI at baseline. Right-heart catheterization and cardiac MRI were repeated after 4 months of treatment. At baseline, acutely increasing preload by fluid loading resulted in a significant increase in pulmonary arterial wedge pressure (PAWP), whereas reducing right ventricular (RV) afterload and increasing LV distensability by acute administration of inhaled nitric oxide had no effect on PAWP. After 4 months of treatment, we observed a significant reduction in RV and LV afterload and increased RV and LV stroke volume, but PAWP significantly increased. Conclusions: In patients with heart failure with preserved ejection fraction and Cpc-PH, 4 months of pulmonary arterial hypertension-specific treatment increased RV and LV stroke volume at the expense of increased PAWP. This increase in PAWP was similarly observed acutely after fluid loading

    Virological and Social Outcomes of HIV-Infected Adolescents and Young Adults in The Netherlands Before and After Transition to Adult Care

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    As a result of effective combination antiretroviral therapy (cART) and advanced supportive healthcare, a growing number of human immunodeficiency virus (HIV)-infected children survive into adulthood. The period of transition to adult care is often associated with impaired adherence to treatment and discontinuity of care. We aimed to evaluate virological and social outcomes of HIV-infected adolescents and young adults (AYAs) before and after transition, and explore which factors are associated with virological failure. We included 59 HIV-infected AYAs from the Netherlands who had entered into pediatric care and transitioned from pediatric to adult healthcare. We used HIV RNA load and cART data from the Dutch Stichting HIV Monitoring database (1996-2014), and collected social and treatment data from patients' medical records from all Dutch pediatric HIV treatment centers and 14 Dutch adult treatment centers involved. We evaluated risk factors for virological failure (VF) in a logistic regression model adjusted for repeated measurements. HIV VF occurred frequently during the study period (14%-36%). During the transition period (from 18 to 19 years of age) there was a significant increase in VF compared with the reference group of children aged 12-13 years (odds ratio, 4.26 [95% confidence interval, 1.12-16.28]; P = .03). Characteristics significantly associated with VF were low educational attainment and lack of autonomy regarding medication adherence at transition. HIV-infected AYAs are vulnerable to VF, especially during the transition period. Identification of HIV-infected adolescents at high risk for VF might help to improve treatment success in this grou

    Virological and Social Outcomes of HIV-Infected Adolescents and Young Adults in the Netherlands before and after Transition to Adult Care

    No full text
    Background. As a result of effective combination antiretroviral therapy (cART) and advanced supportive healthcare, a growing number of human immunodeficiency virus (HIV)-infected children survive into adulthood. The period of transition to adult care is often associated with impaired adherence to treatment and discontinuity of care. We aimed to evaluate virological and social outcomes of HIV-infected adolescents and young adults (AYAs) before and after transition, and explore which factors are associated with virological failure. Methods. We included 59 HIV-infected AYAs from the Netherlands who had entered into pediatric care and transitioned from pediatric to adult healthcare. We used HIV RNA load and cART data from the Dutch Stichting HIV Monitoring database (1996-2014), and collected social and treatment data from patients' medical records from all Dutch pediatric HIV treatment centers and 14 Dutch adult treatment centers involved. We evaluated risk factors for virological failure (VF) in a logistic regression model adjusted for repeated measurements. Results. HIV VF occurred frequently during the study period (14%-36%). During the transition period (from 18 to 19 years of age) there was a significant increase in VF compared with the reference group of children aged 12-13 years (odds ratio, 4.26 [95% confidence interval, 1.12-16.28]; P =. 03). Characteristics significantly associated with VF were low educational attainment and lack of autonomy regarding medication adherence at transition. Conclusions. HIV-infected AYAs are vulnerable to VF, especially during the transition period. Identification of HIV-infected adolescents at high risk for VF might help to improve treatment success in this group

    Virological and Social Outcomes of HIV-Infected Adolescents and Young Adults in the Netherlands before and after Transition to Adult Care

    No full text
    Background. As a result of effective combination antiretroviral therapy (cART) and advanced supportive healthcare, a growing number of human immunodeficiency virus (HIV)-infected children survive into adulthood. The period of transition to adult care is often associated with impaired adherence to treatment and discontinuity of care. We aimed to evaluate virological and social outcomes of HIV-infected adolescents and young adults (AYAs) before and after transition, and explore which factors are associated with virological failure. Methods. We included 59 HIV-infected AYAs from the Netherlands who had entered into pediatric care and transitioned from pediatric to adult healthcare. We used HIV RNA load and cART data from the Dutch Stichting HIV Monitoring database (1996-2014), and collected social and treatment data from patients' medical records from all Dutch pediatric HIV treatment centers and 14 Dutch adult treatment centers involved. We evaluated risk factors for virological failure (VF) in a logistic regression model adjusted for repeated measurements. Results. HIV VF occurred frequently during the study period (14%-36%). During the transition period (from 18 to 19 years of age) there was a significant increase in VF compared with the reference group of children aged 12-13 years (odds ratio, 4.26 [95% confidence interval, 1.12-16.28]; P =. 03). Characteristics significantly associated with VF were low educational attainment and lack of autonomy regarding medication adherence at transition. Conclusions. HIV-infected AYAs are vulnerable to VF, especially during the transition period. Identification of HIV-infected adolescents at high risk for VF might help to improve treatment success in this group
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