Abstract Several studies have highlighted the need for the provision of extra support for parenting and for the children of families with parental cancer, with particular emphasis on the need to protect the psychosocial wellbeing of these children. However despite this, child-centred work still rarely forms part of clinical practice in adult health-care settings. The aims of the present work were: 1) to calculate a population-based estimate for the number of Finnish children affected by parental cancer, 2) to investigate whether these children had used specialised psychiatric services to a greater extent than their peers, 3) to conduct a systematic review of the scientific literature regarding the current state of structured interventions directly targeted at children with parental cancer, 4) to outline the clinicians' experiences of the use of structured child centred interventions in long-term clinical practice, and 5) to assess whether the “Let’s Talk about Children” (LT) and “Family Talk Intervention” (FTI) approaches have any impact on the psychiatric symptom profile of seriously somatically ill parents and their spouses. It was found that every 15th child (6.6% of the children) had a mother or father who was treated for cancer during the years 1987 to 2008. Cases of parental cancer increased these children’s use of specialised psychiatric services significantly by comparison with their peers. A systematic review revealed that the existing number of structured child-centred interventions was small and their methodological content was highly heterogeneous. Clinicians’ long-term experiences of the use of structured child-centred interventions in everyday clinical practice highlighted: the flexible choice of interventions, the importance of taking the children’s needs into account, inter–team collaboration and the need to regard death as an essential topic when working with families with parental cancer. A significant improvement in the parent’s psychological symptoms was observed four months after the completion of the structured intervention. It can be concluded that children affected by parental cancer comprise a substantial part of the general population. Both the increased use of specialised psychiatric services by the children and the positive effect of interventions on the parents justify the pursuance of research-based child-centred work. / Tiivistelmä Useat viimeaikaiset tutkimukset ovat suosittaneet lisätukea vanhemmuudelle ja lapsille syöpäpotilaiden lasten psykososiaalisen hyvinvoinnin turvaamiseksi. Tästä huolimatta lapsikeskeistä työtä tehdään aikuisterveydenhuollossa vähän. Tämän tutkimuksen tavoitteena oli: 1) arvioida väestötasolla niiden suomalaisten lasten lukumäärä, joilla on syöpää sairastava vanhempi, ja verrata näiden lasten psykiatrisen erikoissairaanhoidon käyttöä muihin vastaavan ikäisiin, 2) selvittää systemaattisesti olemassa oleva tutkimustieto lapsikeskeisten strukturoitujen interventioiden käytöstä syöpää sairastavien vanhempien lapsilla, 3) tutkia työntekijöiden pitkäaikaisia kokemuksia strukturoitujen lapsikeskeisten interventioiden käytöstä osana jokapäiväistä kliinistä työtä, 4) selvittää kahden strukturoidun intervention, Lapset puheeksi -keskustelun ja Beardsleen perheintervention, vaikutusta vanhempien psykiatrisiin oireisiin neljä kuukautta intervention jälkeen verrattuna tilanteeseen ennen interventiota. Tulosten mukaan Suomessa 6,6 %:lla vuonna 1987 syntyneistä lapsista oli vanhempi, jota oli hoidettu syövän takia seurantajakson 1987–2008 aikana. Syöpää sairastavien vanhempien lasten psykiatrisen erikoissairaanhoidon käyttö oli tilastollisesti merkitsevästi kohonnut verrattuna muihin samanikäisiin. Lasten tukemiseen tarkoitettujen strukturoitujen interventioiden määrä oli vähäinen ja niiden tutkimuksellinen taso oli vaihteleva. Työntekijöiden kokemukset lapsikeskeisten interventioiden toteuttamisesta potilastyössä nostivat esille useita huomioonotettavia asioita: on tärkeää voida valita interventio joustavasti perheen tarpeiden mukaan, yli sektorirajojen ulottuva yhteistyö on keskeistä, lasten yksilöllisten tarpeiden huomioiminen on tärkeää, kuoleman teema nousee usein esille perheiden kanssa työskenneltäessä. Vanhempien psyykkisten oireiden todettiin vähentyneen intervention jälkeen tehdyssä mittauksessa verrattuna ennen interventiota tehtyyn mittaukseen. Tutkimuksen tulosten perusteella voidaan päätellä, että syöpäpotilaiden lapset muodostavat merkittävän ryhmän väestössä. Syöpäpotilaiden lasten lisääntynyt psykiatrisen erikoissairaanhoidon käyttö jo yksin ja myös interventioiden myönteiset vaikutukset puoltavat lapsikeskeisen työn kehittämistä aikuisterveydenhuoltoon. Kehittämistyön pohjana voidaan käyttää tässä tutkimuksessa käytettyjä strukturoituja lapsikeskeisiä interventioita.

Abstract The purpose of this study was to describe the values of the staff of one psychiatric hospital, the aspects of care appreciated by the patients and the current status of psychiatric care. The staff (n = 125) data were collected with the Schwartz value survey and an instrument measuring the status of organisational activity. The patient (n = 47) data were collected with the instrument measuring the status of organizational activity. The results were presented as frequencies, percentages and means. Multivariate correlations were examined based on cross-tabulation, Chi square test, Student's t-test and one-way analysis of variance. The responses to open-ended questions were analysed with data-based content analysis. Cronbach's alpha coefficient was used to evaluate the reliability of the measuring instruments. The values most highly appreciated by the staff were honesty, respect for one's parents' work, family safety, health, sense of responsibility, subjective pleasure and life experience. The following values were appreciated least: self-sacrificial work for the employer, religion, exciting life and material wealth. The most important motivation type values were hedonism, security and universalism, while desire for variation, traditions and power were considered the least important. The staff values were distinctively collective and communal. The following values were related to patient care: respect for the human value of individuals, humane treatment, reliability and safety of the therapeutic environment. The status assessments concerning care, leadership and atmosphere fell between satisfactory and good. The specific strengths of the working units were professional expertise, competence, experience, co-operation and commitment to work. Privacy on the ward and spiritual care were accomplished least well. Despite their illness, patients highly appreciated the human value of individuals. The expectations applied by patients to this value were related to truth, humanity, respect for human beings, privacy and freedom. The patients appreciated a safe therapeutic environment and humanely respectful treatment. Of the different therapeutic modalities, the patients appreciated medication, crisis interventions, primary nurses and basic care. Two third of the patients felt that their rights had been respected. Involuntary care, experiences of submission, environmentally evoked fears and lack of private space were felt to be difficult matters. The values of the staff and the patients were roughly parallel, with the exception of the value of health, which was not underlined by the patients. It thus seems that psychic illness does not fundamentally alter the person's values. The qualitative part of the study highlighted the contradictions between the ideals and practical realities of patient care. Conflicts in the working community were due to inappropriate use of power, differences in work motivation, aspects of patient care and treatment as well as structural problems in the working and therapeutic environment. Despite occasional value conflicts, the care of patients was considered to be mostly good, safe, humane and just. Due to its stable and uniform value basis, therefore, the working and therapeutic community seems to tolerate occasional ethical and value conflicts. / Tiivistelmä Tämän tutkimuksen tarkoituksena oli kuvata erään psykiatrisen sairaalan henkilökunnan arvoja, potilaiden hoidossaan arvostamia asioita ja psykiatrisen hoidon nykytilaa. Henkilökunnan (n = 125) aineisto kerättiin Schwartzin arvomittarilla ja organisaation toiminnan tilan mittarilla. Potilaiden (n = 47) aineisto kerättiin organisaation toiminnan tilan mittarilla. Tulokset esitettiin frekvenssi-, prosentti- ja keskiarvolukuina. Muuttujien välisiä yhteyksiä tarkasteltiin ristiintaulukoinnin, Khiin neliötestin, Studentin t-testin ja yksisuuntaisen varianssianalyysin avulla. Avokysymykset analysoitiin aineistolähtöisellä sisällön analyysillä. Mittareiden luotettavuutta arvioitiin Cronbachin alfa-kertoimella. Henkilökunnalle tärkeimmät yksittäiset arvot olivat rehellisyys, omien vanhempien työn kunnioittaminen, perheen turvallisuus, terveys, vastuuntunto, mielihyvä ja elämänkokemus. Vähiten tärkeitä arvoja olivat uhrautuva työ työnantajan hyödyksi, uskonnollisuus, jännittävä elämä ja varakkuus. Tärkeimmiksi motivaatiotyyppiarvoiksi erottuivat hedonismi, turvallisuus ja universalismi ja vähiten tärkeinä pidettiin vaihtelunhalua, perinteitä ja valtaa. Henkilökunnan arvoina korostuivat kollektiiviset, yhteisölliset arvot. Potilaan hoitoon liittyviä tärkeitä arvoja olivat ihmisarvon kunnioittaminen, inhimillinen kohtelu, luotettavuus ja hoitoympäristön turvallisuus. Hoitamisen, johtamisen ja ilmapiirin toiminnan tila sijoittui tyydyttävän ja hyvän välille. Työyksiköiden vahvuuksina korostuivat ammattitaito, osaaminen, kokemus, yhteistyö ja sitoutuminen työhön. Yksityisyys osastolla ja hengellinen hoito toteutuivat kaikkein huonoimmin. Ihmisarvo sairaudesta huolimatta oli potilaille tärkeä arvo. Ihmisarvoon potilailla liittyi odotusarvoja, jotka olivat totuus, inhimillisyys, ihmisenä kunnioittaminen, yksityisyys ja vapaus. Potilaat arvostivat turvallista hoitoympäristöä sekä ihmisarvoa kunnioittavaa kohtelua. Hoitomuodoista arvostettiin lääkehoitoa, kriisiapua, omahoitajuutta ja perushoitoa. Potilaista kaksi kolmasosaa koki omien oikeuksiensa toteutuvan hyvin. Pakottaminen hoitoon, alistetuksi tulemisen kokemus, ympäristöstä johtuvat pelot ja yksityisen tilan puute koettiin vaikeina asioina. Henkilökunnan ja potilaiden arvoissa ja arvostuksissa oli havaittavissa samankaltaisuutta lukuun ottamatta terveyden arvoa, jota potilaat eivät tuoneet esille. Psyykkinen sairaus ei siten näyttäisi muuttavan oleellisesti ihmisen arvomaailmaa. Tutkimuksen laadullinen osa toi esille ristiriitaisuutta hoitamisen ihanteiden ja käytännön todellisuuden välillä. Työyhteisössä ristiriitoja aiheuttivat väärä vallankäyttö, työmotivaation epätasaisuus, potilaan hoitoon ja kohteluun liittyvät seikat sekä työ- ja hoitoympäristön rakenteiden ongelmat. Ajoittaisista arvoristiriidoista huolimatta hoidon todettiin olevan pääosin hyvää, turvallista, inhimillistä ja oikeudenmukaista. Vakaan ja yhtenäisen arvoperustan johdosta työ- ja hoitoyhteisö näyttäisi siten kestävän toiminnassa ilmenevät ajoittaiset eettiset ristiriidat ja arvokonfliktit.

O início do século XXI é marcado por diversas questões que correlacionam os problemas da privação da liberdade e sua interface com a Saúde Pública, como nas discussões sobre o uso problemático de álcool e outras drogas e o aumento do encarceramento desses indivíduos, assim como na temática do denominado \"louco infrator\", que, apesar da Reforma Psiquiátrica, continua sem acesso aos seus direitos fundamentais. O presente trabalho tem como problemática central investigar, à luz dos princípios da Reforma Psiquiátrica, como se processa a dinâmica das transferências de pessoas internadas nos Hospitais de Custódia e Tratamento Psiquiátrico do Estado de São Paulo para os Hospitais Psiquiátricos Comuns, Centros de Atenção Psicossocial e Residências Terapêuticas, sob ordem judicial. Tem como objetivos identificar os motivos que determinam transferências, sua legalidade, assim como os discursos das áreas jurídicas, psiquiátricas e de saúde mental que se constituem em torno da pessoa com transtorno mental em conflito com a lei e caracterizar como se apresenta a relação Justiça e Saúde na dinâmica dessas transferências como mecanismo jurídico-sanitário, identificando implicações, alcances e limitações e o lugar da transinstitucionalização nesse processo. Do ponto de vista metodológico, trata-se de pesquisa de natureza documental e qualitativa. Como documentos foram identificados acórdãos, processos de execução criminal de medida de segurança e processos de internação compulsória, entre outros de natureza cível, relacionados a pessoas com transtorno mental em conflito com a lei, que tramitam ou tramitavam no Tribunal de Justiça do Estado de São Paulo. Articula-se a questões emergentes da pesquisa documental, a realização de entrevistas, em profundidade, via Roteiro Temático, com dois grupos de sujeitos de pesquisa, profissionais da área jurídica, assim como, profissionais da área da saúde, com experiência de trabalho relacionada à temática. A discussão e interpretação de dados e narrativas revelam que a noção da periculosidade se apresentou como eixo central para a determinação das transferências. A prática da Internação Compulsória com Interdição, após a extinção da medida de segurança, apresenta-se como forma de continuidade do cumprimento da medida de segurança. A desinternação condicional, como medida exclusivamente jurídica, onde os cuidados em saúde ocupam aspecto secundário, fazendo com que a área da Saúde atue sob a égide da Justiça, representa um aspecto limitador para o processo de transinstitucionalização, com vistas a desinstitucionalização. A desinternação e a imposição de suas condições meramente punitivas representa um grande desafio para o cenário das execuções da medida de segurança com o aumento do número de reinternações, caracterizando o fenômeno do \"revolving door\" ou \"porta giratória\", como forma de gestão em \"circuitos\", que geram \"novos crônicos\". Diante de tal prática, a atuação autônoma dos Centros de Atenção Psicossocial, a expansão das Residências Terapêuticas, assim como o investimento em políticas públicas de inclusão social apresentam-se como condições necessárias para a desinstitucionalização das pessoas com transtorno mental em conflito com a lei. / The beginning of the 21st century is marked by several issues that correlate the problems of deprivation of liberty and its interface with Public Health, such as discussions about the problematic use of alcohol and other drugs and the increasing incarceration of these individuals, as well as the theme. the so-called \"insane offender\" who, despite the Psychiatric Reform, still has no access to his fundamental rights. The present work has as its central problem to investigate, in the light of the principles of Psychiatric Reform, how the dynamics of the transference of hospitalized people in the Custody and Psychiatric Treatment Hospitals of the State of São Paulo to the Common Psychiatric Hospitals, Psychosocial Care Centers and Therapeutic Residences, under court order. It aims to identify the motives that determine transfers, their legality, as well as the discourses of the legal, psychiatric and mental health areas that constitute around the person with mental disorder in conflict with the law and to characterize how the relationship between Justice and Health in the dynamics of these transfers as a legal-health mechanism, identifying implications, scope and limitations and the place of transinstitutionalization in this process. From the methodological point of view, this is a documentary and qualitative research. As documents were identified judgments, proceedings for criminal enforcement of security measure and cases of compulsory detention, among others of a civil nature, related to people with mental disorder in conflict with the law, who are processing or proceeding in the Court of Justice of the State of São Paulo. It is linked to emerging issues of documentary research, conducting in-depth interviews via Thematic Roadmap, with two groups of research subjects, legal professionals, as well as health professionals, with work experience related to thematic. The discussion and interpretation of data and narratives reveal that the notion of dangerousness was presented as the central axis for the determination of transfers. The practice of Compulsory Detention with Interdiction, after the safety measure has been extinguished, is presented as a way of continuing compliance with the safety measure. Conditional withdrawal, as an exclusively legal measure, where health care occupies a secondary aspect, making the Health area act under the aegis of Justice, represents a limiting aspect for the transinstitutionalization process, with a view to deinstitutionalization. The disinternation and imposition of its merely punitive conditions represents a major challenge for the scenario of executions of the security measure with the increase in the number of readmissions, characterizing the phenomenon of revolving door as a form of management in \"Circuits\" that generate \"new chronicles\". Given this practice, the autonomous performance of the Psychosocial Care Centers, the expansion of Therapeutic Residences, as well as the investment in public policies for social inclusion are necessary conditions for the deinstitutionalization of people with mental disorders in conflict with the law.