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Delaktighet i vårdbesluten: delat beslutsfattande inom socialpsykiatrisk vård
Umeå University, Faculty of Medicine, Department of Clinical Sciences, Psychiatry.ORCID iD: 0000-0003-2141-4467
2025 (Swedish)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Participation in care decisions : shared decision-making in social psychiatric care (English)
Abstract [en]

Background: There is a need to increase user influence in psychiatric care. This involves for example user participation in decisions about treatment interventions in the field of social psychiatric care. The field includes Homes for care and residence (HVB, in Swedish Hem för Vård och Boende) which is a context in this thesis and a rare setting for research. Shared decision-making (SDM) is a method that is considered feasible and applicable in healthcare, also in psychiatric care and is mentioned in national guidelines as a method for making decisions in various situations. Despite research-based findings, rights, law and national and global recommendations the method is in practice used to a limited extent.

Method/results: This thesis comprises three studies regarding user participation in decision-making situations, particularly within social psychiatric care. In the first study, professionals who underwent an educational intervention including SDM, recovery and coordinated planning were included. Participants were individually interviewed and asked to describe their experiences regarding changes in attitudes towards and knowledge about, users of mental health care recovery and decisional participation in clinical practice after completing the training. The results are presented in two categories Increased theoretical knowledge and Changed attitudes about practical approach. The participants felt the need to change their role as professionals. Otherwise, users influence and participation in their care and treatment will not increase.

The second study is about users’ experiences of being involved in their own care and treatment, as well as in decision-making situations while residing at HVB. Participants were interviewed in three separate focus groups. This study shows how users perceive participation and influence. The results revealed that users´ involvement in decisions is hampered by the professionals´ approach. Users often experienced a lack of influence in decisions. The result also demonstrated that adequate information and participation might mean greater empowerment. The third study is an implementation study. SDM was introduced at an HVB. Users, staff, and management received an intensive course in the SDM method, and individual interviews focusing on implementation were conducted afterwards by interviewers with own experience of mental illness. Users, staff, and management provided their perspectives on what happens at the HVB when SDM was implemented. A factor for successful implementation of SDM emphasized by all three groups was that everyone received the same training during the same period. It was also found that the introduction of SDM at the HVB had not only affected how decision-making situations were handled individually but also influenced the care atmosphere. This occurred as the professionals changed their approach and met individuals in need of care and support with a more open and positive attitude.

Conclusion: The results of these three studies indicate that users, staff members and managers agree that user participation in decision-making is important. The results also point at that SDM as method can facilitate user participation in decisions. The method is structured and can be adapted individually, which means that user participation in decisions can become a reality. The results indicate that for the method to be integrated into clinical practice, three distinct yet interconnected perspectives are required. First; the management take responsibility to implement and continuously maintain the method. Second; staff members need to assimilate knowledge and skills. Finally, SDM also includes users who based on their best abilities take an active role in the decision-making process.

Abstract [sv]

Denna avhandling lyfter delaktighet i vårdbesluten med speciellt fokus på Delat beslutsfattande. Avhandlingen omfattar tre delstudier som undersökt och fokuserat på delaktighet, främst gällande olika beslutssituationer inom kontexten socialpsykiatrisk vård.

Studie I handlar om personal som genomgått en utbildning i Delat beslutsfattande, återhämtningskunskap och Samordnad individuell plan (SIP). Deltagarna i studien intervjuades individuellt och fick berätta om sina upplevelser om hur de upplevt förändringar i sin attityd och förhållningssätt gällande återhämtning och delaktighet efter utbildningen. Resultatet visar bland annat att personal som arbetar inom olika psykiatriska kontexter upplever att de behöver arbeta med att förändra sin roll som professionella och sitt arbetssätt om brukarna ska vara delaktiga i sin vård och behandling.

Studie II handlar om personer med psykisk ohälsa som är i behov av vård och stöd och vistas på ett Hem för Vård och boende (HVB). Tre separata fokusgrupper genomfördes och deltagarna i studien ombads att berätta om sina upplevelser av att vara delaktiga i sin egen vård och behandling samt i beslutssituationer när de vistades på HVB. Resultatet visar att det förekommer upplevelser av avsaknad gällande inflytande i beslut, men det finns också upplevelser av delaktighet. Delaktigheten kunde dock vara begränsad till att skriva under sina egna planeringsdokument såsom till exempel en genomförandeplan.

Studie III är en implementeringsstudie där Delat beslutsfattande introducerades på ett HVB. Deltagare i studien var personer som var placerade på HVB på grund av allvarlig psykisk ohälsa och substansbruksyndrom samt personal och ledningspersoner som arbetade vid verksamheten. Deltagarna fick intensivutbildning i Delat beslutsfattande-metoden. Individuella intervjuer med personer som var i behov av vård och stöd, personal och ledningspersoner genomfördes efter cirka 2 månader. Intervjuerna utfördes av representanter från FoU-panelen i Region Västerbotten som själva har egen erfarenhet av psykisk ohälsa. Intervjuerna utgick ifrån upplevelser av delaktighet och inflytande samt vad som händer i en verksamhet när Delat beslutsfattande implementeras. Resultatet visar att en framgångsfaktor för en implementering av Delat beslutsfattande var att samtliga i verksamheten fick ta del av samma utbildning under samma period. Införandet av Delat beslutsfattande i verksamheten påverkade inte bara hanteringen av beslutssituationer, utan även upplevelsen av vårdatmosfären. Detta skedde genom att de professionella förändrade sitt förhållningssätt och mötte personer i behov av vård och stöd med ett mer öppet och positivt bemötande.

Utöver dessa tre studier presenteras beskrivning av Studie X – en misslyckad implementeringsstudie. Studie X ingick i den ursprungliga forskningsplanen, men avslutades i förtid på grund av omständigheter såsom organisationsförändringar och personalomsättning. Det finns dock lärdomar att dra av detta misslyckande vilka togs till vara när Studie III designades och genomfördes.

Sammantaget visar studierna att det finns ett stort behov av och en medvetenhet om att det är viktigt att öka personers delaktighet inom socialpsykiatrisk vård. Trots forskning, rekommendationer och kunskapsunderlag används inte metoden Delat beslutsfattande i praktiken i någon större omfattning. Att arbeta med Delat beslutsfattande kan motiveras utifrån ett etiskt perspektiv; att ha delaktighet i sin egen vård ansluter till grundläggande mänskliga rättigheter. Delat beslutsfattande kan även motiveras kliniskt där förhoppningen är att vårdresultaten ska påverkas i positiv riktning. Vad gäller kliniska effekter är dessa ännu inte entydigt vetenskapligt belagda, men det pågår forskning.

Place, publisher, year, edition, pages
Umeå: Umeå University, 2025. , p. 132
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 2354
Keywords [en]
Mental health, Shared decision-making, Social psychiatry, Person-centered care
National Category
Psychiatry
Identifiers
URN: urn:nbn:se:umu:diva-237426ISBN: 9789180706537 (electronic)ISBN: 9789180706520 (print)OAI: oai:DiVA.org:umu-237426DiVA, id: diva2:1950790
Public defence
2025-05-09, Umeälven, Psykiatrihuset, målpunkt ZA21, plan -2, Norrlands universitetssjukhus, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2025-04-16 Created: 2025-04-09 Last updated: 2025-04-11Bibliographically approved
List of papers
1. User participation in decision-making: a qualitative intervention study on mental health professionals’ experiences
Open this publication in new window or tab >>User participation in decision-making: a qualitative intervention study on mental health professionals’ experiences
Show others...
2022 (English)In: Journal of Public Mental Health, ISSN 1746-5729, E-ISSN 2042-8731, Vol. 21, no 3, p. 250-261Article in journal (Refereed) Published
Abstract [en]

Purpose: The purpose of this study was to describe mental health professionals’ experiences of changes in attitudes towards, and knowledge about, users of mental health-care recovery and decisional participation in clinical practice after an educational intervention.

Design/methodology/approach: Users of mental health care want to participate in decisions regarding their own mental health care. Shared decision-making as a method is coherent with recovery orientation in mental health services and results in better-informed patients and fewer conflicts regarding decisions. A qualitative intervention study was designed to evaluate changes in attitudes and knowledge about mental health recovery in Sweden. Nine participants were interviewed, and the data were analysed by content analysis.

Findings: Three categories were generated from the analysis: Increased theoretical knowledge, changing attitudes about practical approaches and the significance of social factors in recovery.

Originality/value: When shared decision-making is to be implemented in mental health, professionals need to gain knowledge about recovery and need to adopt changed roles as health professionals. Educational interventions therefore seem necessary if such changes are to happen.

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2022
Keywords
Educational intervention, Mental health, Recovery, Shared decision-making
National Category
Health Care Service and Management, Health Policy and Services and Health Economy Public Health, Global Health and Social Medicine
Identifiers
urn:nbn:se:umu:diva-198233 (URN)10.1108/JPMH-11-2021-0140 (DOI)000823168900001 ()2-s2.0-85133758627 (Scopus ID)
Available from: 2022-07-21 Created: 2022-07-21 Last updated: 2025-04-09Bibliographically approved
2. Service user participation in decision-making: a qualitative study from a services user’s perspective
Open this publication in new window or tab >>Service user participation in decision-making: a qualitative study from a services user’s perspective
2023 (English)In: Journal of Public Mental Health, ISSN 1746-5729, E-ISSN 2042-8731, Vol. 22, no 4, p. 157-169Article in journal (Refereed) Published
Abstract [en]

Purpose: The purpose of this study is to describe participation in decision-making among service users with severe mental illness.

Design/methodology/approach: Service users want to participate in decision-making and in the planning of their care. There are widely known methods, such as shared decision-making, that could be used to facilitate service user participation. Three focus group interviews were conducted with the participation of 14 persons with mental illness and/or substance abuse who were service users at two Swedish Homes for Care and Residence (HVB). Data were analyzed by qualitative content analysis.

Findings: Two themes emerged: service users’ involvement in decisions is hampered by the professionals’ approach and adequate information and experience of participation means greater empowerment.

Research limitations/implications: Although it is known that service users would like to have more influence, and that methods like shared decision-making are recommended to empower service users and improve the decision process, research on these matters is limited.

Practical implications: This study reveals that there is a need of more systematic decisional support, such as shared decision-making, so that service users can be seen as important persons not only in guidelines and policy documents but also in clinical practice.

Social implications: The findings indicate that service users do not participate in decisions systematically, although policies, guidelines and laws providing that service users should be offered an active part in decision-making with regard to their care and treatment.

Originality/value: Although it is known that service users would like to have more influence, and that methods like shared decision-making are recommended to empower service users and improve their decision process, research on these matters is limited. The findings indicate that service users do not participate in decisions systematically, even though policies, guidelines and laws are in place stipulating that service users should be offered an active part in decision-making with regard to their own care and treatment. The results of this project bring improvement opportunities to light.

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2023
Keywords
Mental health, Recovery, Shared decision-making, User participation
National Category
Social Work
Identifiers
urn:nbn:se:umu:diva-212486 (URN)10.1108/JPMH-12-2022-0129 (DOI)001032543900001 ()2-s2.0-85165557193 (Scopus ID)
Available from: 2023-08-01 Created: 2023-08-01 Last updated: 2025-04-09Bibliographically approved
3. Implementing shared decision-making as part of a recovery-oriented practice at a home for care or residence for people with severe mental illness
Open this publication in new window or tab >>Implementing shared decision-making as part of a recovery-oriented practice at a home for care or residence for people with severe mental illness
2025 (English)In: Journal of Psychosocial Rehabilitation and Mental Health, ISSN 2198-9834, E-ISSN 2198-963XArticle in journal (Refereed) Epub ahead of print
Abstract [en]

Background: Although shared decision-making (SDM) has been widely recommended in clinical guidelines, it is not implemented in practice. In early 2024, managers of a centre (home for care or residence, HVB) in Sweden decided to implement SDM. Researchers arranged an intensive course that included training in SDM, which was offered to all users, staff members and managers at the centre.

Aim: To explore the experiences of users, staff members and managers when SDM was introduced at a centre for women suffering from mental illness.

Method and Results: After introducing SDM, persons who had experience as users of mental health services conducted individual interviews with users, staff members and managers. The data were transcribed automatically during the video interviews. The data were analysed using thematic analysis, and the results represent three different aspects. Users: Previous experience is important, Attitudes to participation and What is needed for continuation. Staff: Ability to increase participation and SDM as an integrated way of working. Managers: Changes in the care atmosphere and Management during the introduction.

Relevance: Research concerning people staying at HVBs is scarce, as is research on SDM concerning adults with severe mental illness. It is important to highlight the needs of this group, as participation today and in the future is an important and often overlooked aspect for these users.

Place, publisher, year, edition, pages
Springer Nature, 2025
Keywords
Home for care and residence, Implementing, Shared decision making, Training, User involvement
National Category
Nursing Social Work
Identifiers
urn:nbn:se:umu:diva-235678 (URN)10.1007/s40737-024-00446-8 (DOI)2-s2.0-85217215727 (Scopus ID)
Available from: 2025-02-24 Created: 2025-02-24 Last updated: 2025-04-09

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