Mennesker med psykiske funksjonshindringer i risikosamfunnet : en hverdagsnær tilnærming

Norsk: I dagens samfunn kan mange tidligere problemer og utfordringer mestres. Samtidig skapes paradoksalt nok nye risikoer, trusler og usikkerheter. Samfunnets utvikling innebærer at det stilles større krav til den enkelte når det gjelder å ta ansvar, ta viktige avgjørelser og å ’skape sitt eget liv’. Utviklingen – i retning av hva som har blitt omtalt som et risikosamfunn – kan forventes å ramme utsatte grupper mer enn andre. Denne studien, som er resultat av et forskningssamarbeid mellom Høgskolen i Hedmark og brukerorganisasjonen Mental Helse Hedmark, undersøker hvilke konsekvenser samfunnets forandring mot et risikosamfunn kan få for personer med psykiske funksjonshindringer. Forskningsmetoden bygger på handlingsorientert forskningssamarbeid, der forskere og deltagere fra brukerorganisasjonen utgjør et forskende felleskap. De empiriske dataene er skapt gjennom tre flersteg fokusgruppeintervjuer, som er analysert kvalitativt og tematisk. Resultatene er presentert som fem temaer: Forandring og usikkerhet hvor fokus ligger på den raske endringstakten i samfunnet, som skaper usikkerhet og stress. Samfunnet oppleves både som mer påtrengende (f. eks. gjennom bakgrunnsmusikk som den enkelte ikke kan velge bort) og fjernt (som telefonkontakter til ’call-centers’ langt unna). Psykiske lidelser og samfunnshindringer innebærer at samfunnet er blitt stadig mer abstrakt og uhåndterlig; samfunnskontaktene er byråkratiske og administrativt preget, ikke minst innen NAV-systemet. Mangel på stabile og varige personkontakter skaper mistillit. Muligheter for inkludering i arbeidslivet oppleves som begrenset. Teknologiens utvikling innebærer både begrensninger og muligheter. En vanskelighet er å følge med på den raske tekniske utviklingen og dermed få del i dens muligheter, f.eks. når det gjelder informasjon og kommunikasjon. Individualisering og ensomhet fokuserer det moderne samfunnets paradoksale krav om at den enkelte skal ’skape sin egen verden’, men samtidlig holde seg innen rammene for hva som betraktes som ’normalt’. Kontakter med hjelpeinstanser blir upersonlige og stadig mer preget av rasjonalisering av tjenestene, og av at kommunikasjonen tidvis blir vanskelig å forstå. Hverdagslivsmestring og mening blir i dette samfunnet stadig viktigere. Tilhørighet til arbeidslivet er en viktig del av opplevelsen av mestring og mening, og fellesskapet innen Mental Helse en annen, preget av tillit, brukerstyring og tilpasset omsorg. Studien viser at det teoretiske begrepet risikosamfunnet – med dets kjennetegn slik som høy endringstakt, usikkerhet, grenseløshet, fare og svekket tillit – tilsvares av konkrete erfaringer som kan identifiseres i fokusgruppeintervjuerne. Antagelsen om at samfunnsutviklingen særlig kan ramme utsatte grupper støttes. Samtidig finnes potensielle positive konsekvenser, blant annet gjennom teknologiens utvikling og muligheter for tilpassede arbeidsforhold. Utviklingen mot et alternativt fellesskap, som innen Mental Helse, kan kompensere for noe av den ensomhet og fremmedgjøring som mange opplever, og derigjennom fungere som en motkraft til samfunnets økede fokusering på det individuelle

People with mental disabilities negotiating life in the risk society : an empirical approach

Norsk: I dagens samfunn kan mange tidligere problemer og utfordringer mestres. Samtidig skapes paradoksalt nok nye risikoer, trusler og usikkerheter. Samfunnets utvikling innebærer at det stilles større krav til den enkelte når det gjelder å ta ansvar, ta viktige avgjørelser og å ’skape sitt eget liv’. Utviklingen – i retning av hva som har blitt omtalt som et risikosamfunn – kan forventes å ramme utsatte grupper mer enn andre. Denne studien, som er resultat av et forskningssamarbeid mellom Høgskolen i Hedmark og brukerorganisasjonen Mental Helse Hedmark, undersøker hvilke konsekvenser samfunnets forandring mot et risikosamfunn kan få for personer med psykiske funksjonshindringer. Forskningsmetoden bygger på handlingsorientert forskningssamarbeid, der forskere og deltagere fra brukerorganisasjonen utgjør et forskende felleskap. De empiriske dataene er skapt gjennom tre flersteg fokusgruppeintervjuer, som er analysert kvalitativt og tematisk. Resultatene er presentert som fem temaer: Forandring og usikkerhet hvor fokus ligger på den raske endringstakten i samfunnet, som skaper usikkerhet og stress. Samfunnet oppleves både som mer påtrengende (f. eks. gjennom bakgrunnsmusikk som den enkelte ikke kan velge bort) og fjernt (som telefonkontakter til ’call-centers’ langt unna). Psykiske lidelser og samfunnshindringer innebærer at samfunnet er blitt stadig mer abstrakt og uhåndterlig; samfunnskontaktene er byråkratiske og administrativt preget, ikke minst innen NAV-systemet. Mangel på stabile og varige personkontakter skaper mistillit. Muligheter for inkludering i arbeidslivet oppleves som begrenset. Teknologiens utvikling innebærer både begrensninger og muligheter. En vanskelighet er å følge med på den raske tekniske utviklingen og dermed få del i dens muligheter, f.eks. når det gjelder informasjon og kommunikasjon. Individualisering og ensomhet fokuserer det moderne samfunnets paradoksale krav om at den enkelte skal ’skape sin egen verden’, men samtidlig holde seg innen rammene for hva som betraktes som ’normalt’. Kontakter med hjelpeinstanser blir upersonlige og stadig mer preget av rasjonalisering av tjenestene, og av at kommunikasjonen tidvis blir vanskelig å forstå. Hverdagslivsmestring og mening blir i dette samfunnet stadig viktigere. Tilhørighet til arbeidslivet er en viktig del av opplevelsen av mestring og mening, og fellesskapet innen Mental Helse en annen, preget av tillit, brukerstyring og tilpasset omsorg. Studien viser at det teoretiske begrepet risikosamfunnet – med dets kjennetegn slik som høy endringstakt, usikkerhet, grenseløshet, fare og svekket tillit – tilsvares av konkrete erfaringer som kan identifiseres i fokusgruppeintervjuerne. Antagelsen om at samfunnsutviklingen særlig kan ramme utsatte grupper støttes. Samtidig finnes potensielle positive konsekvenser, blant annet gjennom teknologiens utvikling og muligheter for tilpassede arbeidsforhold. Utviklingen mot et alternativt fellesskap, som innen Mental Helse, kan kompensere for noe av den ensomhet og fremmedgjøring som mange opplever, og derigjennom fungere som en motkraft til samfunnets økede fokusering på det individuelle.English: In today´s society, numerous of previous challenges are mastered, while new and other risks, threats and uncertainties paradoxically have emerged. The societal development implies greater demands on the individual, concerning one´s own responsibility, ability of making important choices and shaping one´s own life. This development, towards what has been characterised as a risk society, might harm already vulnerable groups more than others. This study, which is a result of a research cooperation between Hedmark University College, Norway (Høgskolen i Hedmark) and the user-organisation Mental Health Hedmark, explores how societal changes towards the risk society might affect people with mental disabilities. The research approach builds on co-operative inquiry, where college researchers and participants from Mental Health constitute a ’community of inquiry’. Empirical data has been collected through three multistage focus group interviews, thereafter analysed qualitatively and presented as five main themes: Change and uncertainty emphasizes the rapid societal processes, creating uncertainty and stress. Society appears at the same time more importunate (i.e. through unavoidable background music in shops, etc) and more remote (i.e. through telephone contacts via call-centers far away). Psychical problems and and societal obstacles, meaning that society has turned more and more abstract and hard to handle, bureaucratic and administratively dominated. Not least is this the case in relation to the NAV-system (The Norwegian Labour and Welfare Administration). Lack of stable and durable personal contacts creates mistrust. The chances to get into working life are limited. Technological developments imply both limitations and new options. It might be difficult to grasp the rapid technological changes and thereby to take advantage of growing possibilities, concerning for instance information and communication. Individualisation and loneliness focuses modern society´s paradoxical demand on each individual, to ’shape his/her own world’ and at the same time stay within the borders of normality. Contacts with social welfare and care organisations tend to be more and more rare and impersonal, and the communication sometimes is hard to comprehend. To cope with the every-day life and (to create) meaning will in such a society be increasingly important. Belonging to working-life is one essential component, affinity to the ’community’ Mental Health is another, characterised by trust, user participation and adjusted help and care. The study shows that the theoretical concept risk society – characterised by rapid societal changes, uncertainty, lack of borders, danger and weakened trust – correspond to real experiences which can be identified in the focus group interviews. Our assumption that changes on the societal level might especially affect vulnerable groups is thereby strengthened. At the same time, there are potential positive consequences, for instance through technological development and adapted working conditions. The way towards an alternative community, like Mental Health, might compensate for the feeling of loneliness and alienation experienced by many, and thereby establishes a resisting-power to society´s increasing focus on individuality

Det nødvendige brukerperspektivet i psykisk helsearbeid

Norsk: Rapportens tema er brukerperspektivet i psykisk helsearbeid. Bevisstheten om dette perspektivet - og nødvendigheten av aktiv brukermedvirkning på alle nivåer i samfunnet - har vært i jevn utvikling de senere år. Men fortsatt er det et godt stykke igjen før reell medvirkning er realisert. Bakgrunnen for dreiningen bort fra en ensidig profesjonsstyrt tjenesteutvikling til en utvikling preget av større vekt på brukerperspektivet, har både ideologiske, helsepolitiske, pragmatiske, økonomiske og faglige begrunnelser. En del av disse motivene blir belyst i denne rapporten. Den overordnede hensikten med rapporten er å løfte frem brukeres erfaringer og synspunkter relatert til psykisk lidelse, erfaringer med tjenestetilbud og brukermedvirkning. Brukermedvirkning i forskningssamarbeid i høgskolesektoren blir videre belyst som en nødvendig strategi for utvikling av kunnskapsgrunnlaget i psykisk helsearbeid. I tillegg undersøkes hva verdifullt psykisk helsearbeid i lokalsamfunnet vil innebære

“Care or control?”: a qualitative study of staff experiences with outpatient commitment orders

Purpose Outpatient commitment orders are being increasingly used in many countries to ensure follow-up care of people with psychotic disorders after discharge from hospital. Several studies have examined outpatient commitment in relation to use of health care services, but there have been fewer studies of health professionals’ experiences with the scheme. The purpose of this study was to examine health professionals’ experiences with patients subject to outpatient commitment. Methods This was a focus group study using a descriptive and exploratory approach. The study was based on three focus group interviews with a total of 22 participants. Data were analysed using qualitative content analysis. Results The study showed that health professionals had a positive attitude towards outpatient commitment and considered it necessary for patients with psychosis who lacked insight and did not collaborate on treatment. At the same time their attention to patients’ lack of insight could lead to a paternalistic approach more than measures to enhance patient autonomy. This challenged their therapeutic relationship with the patient. Conclusion Health professionals found it difficult to combine control with therapeutic care, but gave greater emphasis to patients’ need for treatment and continuity of care than to their autonomy. This dilemma indicates a need to discuss whether increased attention to patients’ autonomy rather than insight into their illness would improve treatment cooperation and reduce the use of coercion

“Care or control?”: a qualitative study of staff experiences with outpatient commitment orders

Purpose Outpatient commitment orders are being increasingly used in many countries to ensure follow-up care of people with psychotic disorders after discharge from hospital. Several studies have examined outpatient commitment in relation to use of health care services, but there have been fewer studies of health professionals’ experiences with the scheme. The purpose of this study was to examine health professionals’ experiences with patients subject to outpatient commitment. Methods This was a focus group study using a descriptive and exploratory approach. The study was based on three focus group interviews with a total of 22 participants. Data were analysed using qualitative content analysis. Results The study showed that health professionals had a positive attitude towards outpatient commitment and considered it necessary for patients with psychosis who lacked insight and did not collaborate on treatment. At the same time their attention to patients’ lack of insight could lead to a paternalistic approach more than measures to enhance patient autonomy. This challenged their therapeutic relationship with the patient. Conclusion Health professionals found it difficult to combine control with therapeutic care, but gave greater emphasis to patients’ need for treatment and continuity of care than to their autonomy. This dilemma indicates a need to discuss whether increased attention to patients’ autonomy rather than insight into their illness would improve treatment cooperation and reduce the use of coercion

The necessary user perspective in mental health care

Norsk: Rapportens tema er brukerperspektivet i psykisk helsearbeid. Bevisstheten om dette perspektivet - og nødvendigheten av aktiv brukermedvirkning på alle nivåer i samfunnet - har vært i jevn utvikling de senere år. Men fortsatt er det et godt stykke igjen før reell medvirkning er realisert. Bakgrunnen for dreiningen bort fra en ensidig profesjonsstyrt tjenesteutvikling til en utvikling preget av større vekt på brukerperspektivet, har både ideologiske, helsepolitiske, pragmatiske, økonomiske og faglige begrunnelser. En del av disse motivene blir belyst i denne rapporten. Den overordnede hensikten med rapporten er å løfte frem brukeres erfaringer og synspunkter relatert til psykisk lidelse, erfaringer med tjenestetilbud og brukermedvirkning. Brukermedvirkning i forskningssamarbeid i høgskolesektoren blir videre belyst som en nødvendig strategi for utvikling av kunnskapsgrunnlaget i psykisk helsearbeid. I tillegg undersøkes hva verdifullt psykisk helsearbeid i lokalsamfunnet vil innebære.The theme of this report is the user perspective in mental health care. The awareness of this perspective – and the necessity of active user participation at all levels in society – has steadily been increasing over the last years. But there is still a long way to go before genuine participation is realized. The reasons for this turning away from the one-sided professional run service development towards an orientation characterized by greater emphasis on the user perspective, have ideological, healthpolitical, pragmatic, economic and professional arguments. Some of these motivations are being outlined in this report. The overall purpose of the report is to focus on the users’ experiences and views in relation to mental suffering, treatment and services and user participation. User participation in academic research is also highlighted and underscored as a necessary strategy for developing the body of knowledge in mental health care. In addition, the characteristics of the «valuable» mental health care in the local community are described

Mental health professionals’ experiences with shared decision-making for patients with psychotic disorders: a qualitative study

Background: Shared decision-making (SDM) is a process whereby clinicians and patients work together to select treatments based on both the patient's preferences and clinical evidence. Although patients with psychotic disorders want to participate more in decisions regarding their care, they have limited opportunities to do so because of various barriers. Knowing about health professionals' experiences with SDM is important toward achieving successful implementation. The study aim was to describe and explore health professionals' SDM experiences with patients with psychotic disorders. Methods: Three focus group interviews were conducted, with a total of 18 health professionals who work at one of three Norwegian community mental health centres where patients with psychotic disorders are treated. We applied a descriptive and exploratory approach using qualitative content analysis. Results: Health professionals primarily understand the SDM concept to mean giving patients information and presenting them with a choice between different antipsychotic medications. Among the barriers to SDM, they emphasized that patients with psychosis have a limited understanding of their health situation and that time is needed to build trust and alliances. Health professionals mainly understand patients with psychotic disorders as a group with limited abilities to make their own decisions. They also described the concept of SDM with little consideration of presenting different treatment options. Psychological or social interventions were often presented as complementary to antipsychotic medications, rather than as an alternative to them. Conclusion: Health professionals' understanding of SDM is inconsistent with the definition commonly used in the literature. They consider patients with psychotic disorders to have limited abilities to participate in decisions regarding their own treatment. These findings suggest that health professionals need more theoretical and practical training in SDM

Experiences of shared decision making among patients with psychotic disorders in Norway: a qualitative study

Background Shared decision making (SDM) is a process where the patient and the health professional collaborate to make decisions based on both the patient’s preferences and the best available evidence. Patients with psychotic disorders are less involved in making decisions than they would like. More knowledge of these patients’ experiences of SDM may improve implementation. The study aim was to describe and explore experiences of SDM among patients with psychotic disorders in mental health care. Methods Individual interviews were conducted with ten persons with a psychotic disorder. They were service users of two community mental health centres. The transcribed material was analysed using qualitative content analysis. Results Four-fifths of the participants in this study found that they received insufficient information about their health situation and treatment options. All participants experienced that only one kind of treatment was often presented, which was usually medication. Although the study found that different degrees of involvement were practised, two thirds of the participants had little impact on choices to be made. This was despite the fact that they wanted to participate and felt capable of participating, even during periods of more severe illness. The participants described how important it was that SDM in psychosis was based on a trusting relationship, but stated that it took time to establish such a relationship. Conclusions This study with ten participants indicates that patients with psychotic disorders experienced that they were not allowed to participate as much as they wanted to and believed they were capable of. Some patients were involved, but to a lesser degree than in SDM. More and better tailored information communicated within a trusting relationship is needed to provide psychotic patients with a better basis for active involvement in decisions about their health care

Experiences of shared decision making among patients with psychotic disorders in Norway: a qualitative study

Background: Shared decision making (SDM) is a process where the patient and the health professional collaborate to make decisions based on both the patient’s preferences and the best available evidence. Patients with psychotic disorders are less involved in making decisions than they would like. More knowledge of these patients’ experiences of SDM may improve implementation. The study aim was to describe and explore experiences of SDM among patients with psychotic disorders in mental health care. Methods: Individual interviews were conducted with ten persons with a psychotic disorder. They were service users of two community mental health centres. The transcribed material was analysed using qualitative content analysis. Results: Four-ffths of the participants in this study found that they received insufcient information about their health situation and treatment options. All participants experienced that only one kind of treatment was often presented, which was usually medication. Although the study found that diferent degrees of involvement were practised, two thirds of the participants had little impact on choices to be made. This was despite the fact that they wanted to participate and felt capable of participating, even during periods of more severe illness. The participants described how important it was that SDM in psychosis was based on a trusting relationship, but stated that it took time to establish such a relationship. Conclusions: This study with ten participants indicates that patients with psychotic disorders experienced that they were not allowed to participate as much as they wanted to and believed they were capable of. Some patients were involved, but to a lesser degree than in SDM. More and better tailored information communicated within a trusting relationship is needed to provide psychotic patients with a better basis for active involvement in decisions about their health care. Keywords: Shared decision making, psychotic disorders, mental health services, qualitative researc

Mental health professionals’ experiences with shared decision-making for patients with psychotic disorders: a qualitative study

Background Shared decision-making (SDM) is a process whereby clinicians and patients work together to select treatments based on both the patient’s preferences and clinical evidence. Although patients with psychotic disorders want to participate more in decisions regarding their care, they have limited opportunities to do so because of various barriers. Knowing about health professionals’ experiences with SDM is important toward achieving successful implementation. The study aim was to describe and explore health professionals’ SDM experiences with patients with psychotic disorders. Methods Three focus group interviews were conducted, with a total of 18 health professionals who work at one of three Norwegian community mental health centres where patients with psychotic disorders are treated. We applied a descriptive and exploratory approach using qualitative content analysis. Results Health professionals primarily understand the SDM concept to mean giving patients information and presenting them with a choice between different antipsychotic medications. Among the barriers to SDM, they emphasized that patients with psychosis have a limited understanding of their health situation and that time is needed to build trust and alliances. Health professionals mainly understand patients with psychotic disorders as a group with limited abilities to make their own decisions. They also described the concept of SDM with little consideration of presenting different treatment options. Psychological or social interventions were often presented as complementary to antipsychotic medications, rather than as an alternative to them. Conclusion Health professionals’ understanding of SDM is inconsistent with the definition commonly used in the literature. They consider patients with psychotic disorders to have limited abilities to participate in decisions regarding their own treatment. These findings suggest that health professionals need more theoretical and practical training in SDM