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Nilsson, P., Torgé, C. J. & Jegermalm, M. (2024). Anhörigas erfarenheter av anhörigperspektivet i mötet med anhörigkonsulenter och andra professionella. Journal of Care Research, 10(1), 1-15
Open this publication in new window or tab >>Anhörigas erfarenheter av anhörigperspektivet i mötet med anhörigkonsulenter och andra professionella
2024 (Swedish)In: Journal of Care Research, ISSN 2387-5976, E-ISSN 2387-5984, Vol. 10, no 1, p. 1-15Article in journal (Refereed) Published
Abstract [sv]

År 2022 antog regeringen Sveriges första nationella anhörigstrategi, där sägs att vården och omsorgen som ges till dennärstående ska ske med ett anhörigperspektiv. Anhörigas insatser till den närstående ska beaktas, och uppmärksammas,deras kunskaper, behov av delaktighet och information ska tillvaratas. Syftet i den här artikeln var att beskrivaoch analysera anhörigas egna erfarenheter av ett anhörigperspektiv i mötet med professionen och vad som bidrartill att göra anhörigskapet hanterbart. Datainsamlingen skedde genom en kvalitativ design med 18 semistrukturellaintervjuer med anhöriga till personer med långvarig sjukdom eller funktionsnedsättning. Fem teman framkom somhandlar om i vilken utsträckning anhörigas möte med professionella kan bidra till ett mer hanterbart anhörigskap;professionens bemötande av anhöriga, mötet med anhörigkonsulenten, anhörigas delaktighet, få hjälp genom systemetoch lättillgänglig och kontinuerlig kontakt och information. Slutsatsen är att ju mindre anhöriga blir bemöttaenligt de nämnda temana desto större är risken för att en krissituation och ett svårhanterbart anhörigskap ska uppstå.Omvänt gäller om anhöriga upplever att de blir väl bemötta utifrån temana så blir anhörigskapet mer begripligtoch hanterbart. Anhörigperspektivet är en process av kognitivt och kommunikativt arbete som i anhörigas mötemedprofessionen skapar begriplighet och som kan bidra till eller motverka ett hanterbart anhörigskap.

Abstract [en]

In 2022 the Swedish government adopted Sweden’s first national caregiver strategy, which stated that care and support provided to the next of kin should be conducted with a caregiver perspective. The efforts of the caregivers for the next of kin should be considered and recognized, and their knowledge, need for participation and information should be utilized. The aim of this article is to describe and analyze the caregivers’ own experiences of a caregiver perspective when interacting with professionals, as well as what contributes to making caregiving manageable. Data collection was carried out through a qualitative design involving 18 semi-structured interviews with caregivers of individuals with chronic illness or disabilities. Five themes emerged regarding the extent to which caregivers’ interactions with professionals can contribute to more manageable caregiving: the professionals’ approach towards caregivers, interactions with family care consultants, caregivers’ participation, receiving assistance through the system, and easily accessible and continuous contact and information. The conclusion is that the less caregivers feel addressed according to the mentioned themes, the greater the risk of a crisis situation and unmanageable caregiving arising. Conversely, if caregivers feel well addressed based on these themes, caregiving becomes more comprehensible and manageable. The caregiver perspective is a process of cognitive and communicative work that, in the caregivers’ interactions with professionals, creates comprehensibility and can contribute to or counteract manageable caregiving.

Place, publisher, year, edition, pages
Idunn, 2024
Keywords
Carer support, Sense-making, Crisis, Family care consultant, Manageable caregiving, Anhörigstöd, Att begripliggöra, Kris, Anhörigkonsulent, Hanterbart anhörigskap
National Category
Social Work
Identifiers
urn:nbn:se:esh:diva-10993 (URN)10.18261/tfo.10.1.1 (DOI)
Available from: 2024-05-15 Created: 2024-08-16Bibliographically approved
Torgé, C. J., Nilsson, P. & Jegermalm, M. (2024). Support to 'non-clients' [Stöd till 'icke-klienter']: Care managers' role in direct and indirect carer support [Biståndshandläggarnas roll i direkt och indirekt anhörigstöd]. European Journal of Social Work
Open this publication in new window or tab >>Support to 'non-clients' [Stöd till 'icke-klienter']: Care managers' role in direct and indirect carer support [Biståndshandläggarnas roll i direkt och indirekt anhörigstöd]
2024 (English)In: European Journal of Social Work, ISSN 1369-1457, E-ISSN 1468-2664Article in journal (Refereed) Epub ahead of print
Abstract [en]

Social service provision in Europe has increasingly incorporated informal carers. Consequently, these carers are now included within the scope of all social workers, including care managers. Most support for carers is indirect support, where opportunities for respite are channelled through the care receiver’s needs assessment. This approach highlights the unique role of care managers providing carer support as they balance their public task directed towards clients with the concurrent policy-driven expectation to support carers. The aim of this article is to explore how care managers, as street-level bureaucrats, ‘make’ carer support policy on the ground. Using systematic text condensation of 10 qualitative interviews with care managers in Sweden, we present three themes to understand care managers’ experiences. Care managers work ‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outside one’s scope of work, and there are possibilities and practices towards a carer perspective. Following Lipsky’s dictum that street-level bureaucrats’ actions effectively ‘become’ the public policy they carry out, our results highlight care managers’ possibilities and challenges in shaping what direct and indirect carer support looks like on the ground.

Abstract [sv]

Socialtjänsterna i Europa har i allt högre grad omfamnat informella omsorgsgivare. Anhöriga blir följaktligen en del av socialarbetarnas ansvar, inklusive biståndshandläggarnas arbete. Merparten av stöd till anhöriga består av indirekt stöd, som genom insatser till den omsorgsbehövande möjliggör avlastning. Detta aktualiserar biståndshandläggarnas unika roll då de balanserar skyldigheten mot sina klienter med ett ansvar att stödja anhöriga. Syftet med denna artikel är att undersöka hur biståndshandläggare, som gräsrotsbyråkrater, ‘gör’ policyn om anhörigstöd. Den belyser också biståndshandläggarnas möjligheter och utmaningar i att stödja anhöriga. Med hjälp av systematisk textkondensering av 10 kvalitativa intervjuer med biståndshandläggare presenterar vi tre teman för att förstå deras erfarenheter. Biståndshandläggare arbetar hand-i-hand och hands-on med anhöriga, anhöriga är inom, men utanför deras arbete, och vi visar möjligheter och genomförande av ett anhörigperspektiv. Efter Lipskys talesätt att gräsrotsbyråkrater ‘gör policy’, belyser våra resultat behovet av att ytterligare stärka biståndshandläggare i sin roll för att kunna ge formellt och informellt stöd till anhöriga. Biståndshandläggare har en viktig roll i hur policy för anhörigstöd omsätts i praktiken.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
Caregiver, Care manager, Family carer, Needs assessor, Street-level bureaucrats, Biståndshandläggare, Biståndsbedömning, Omsorgsgivare, Anhörigvårdare
National Category
Social Work
Identifiers
urn:nbn:se:esh:diva-10992 (URN)10.1080/13691457.2024.2358350 (DOI)001236000300001 ()
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2020-01326
Available from: 2024-06-11 Created: 2024-08-16 Last updated: 2024-08-16Bibliographically approved
Nilsson, P., Jegermalm, M., Rolander, B. & Joy Torgé, C. (2023). Anhörigperspektivet från anhörigkonsulenters och biståndshandläggares horisont. In: Gunilla Klingberg; Ulrika Hallberg (Ed.), Stora anhörigboken: (pp. 155-178). Studentlitteratur AB
Open this publication in new window or tab >>Anhörigperspektivet från anhörigkonsulenters och biståndshandläggares horisont
2023 (Swedish)In: Stora anhörigboken / [ed] Gunilla Klingberg; Ulrika Hallberg, Studentlitteratur AB, 2023, p. 155-178Chapter in book (Other academic)
Place, publisher, year, edition, pages
Studentlitteratur AB, 2023
Keywords
Anhörigstöd, Anhörigomsorg
National Category
Other Social Sciences Social Work
Identifiers
urn:nbn:se:esh:diva-10986 (URN)978-91-44-15678-1 (ISBN)
Available from: 2024-08-05 Created: 2024-08-05 Last updated: 2024-08-12Bibliographically approved
Jegermalm, M. & Torgé, C. J. (2023). Three caregiver profiles: who are they, what do they do, and who are their co-carers?. European Journal of Social Work, 26(3), 466-479
Open this publication in new window or tab >>Three caregiver profiles: who are they, what do they do, and who are their co-carers?
2023 (English)In: European Journal of Social Work, ISSN 1369-1457, E-ISSN 1468-2664, Vol. 26, no 3, p. 466-479Article in journal (Refereed) Published
Abstract [en]

In Sweden, a country with one of the highest public spending on long term care, there is also extensive informal care, i.e. unpaid care by family, friends, or neighbours. In this article, we explore the spectrum of informal caring using data from a nationally representative survey of caregivers in the Swedish population. We describe three different caregiver profiles and analyse them in relation to their panorama of care, i.e. the extent to which caring is shared with other formal- and informal co-carers. The first profile, the co-habitant family carer, consists of caregivers providing help for someone in the same household with special care needs, and were mostly alone in intensive caregiving. The second profile, persons in the care network, consists of caregivers providing help to someone with care needs in another household. They have a network of both informal and formal co-carers. Finally, the helpful fellowman consists of caregivers providing help for someone without special needs in another household. In developing relevant carer support, it is important to acknowledge that caregivers are not a homogenous group. Thus, to fulfil national ambitions to support carers across the board, policy and practice need to have a diverse group of carers in mind.

Place, publisher, year, edition, pages
Taylor & Francis, 2023
Keywords
Carer typologies, Carer survey, Informal care, Panorama of care
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-10995 (URN)10.1080/13691457.2021.2016647 (DOI)000733993000001 ()
Available from: 2022-01-11 Created: 2024-08-16 Last updated: 2024-08-16Bibliographically approved
Bülow, P. H., Finkel, D., Allgurin, M., Torgé, C. J., Jegermalm, M., Ernsth-Bravell, M. & Bülow, P. (2022). Aging of severely mentally ill patients first admitted before or after the reorganization of psychiatric care in Sweden. International Journal of Mental Health Systems, 16, Article ID 35.
Open this publication in new window or tab >>Aging of severely mentally ill patients first admitted before or after the reorganization of psychiatric care in Sweden
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2022 (English)In: International Journal of Mental Health Systems, E-ISSN 1752-4458, Vol. 16, article id 35Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: The concept of deinstitutionalization started in the 1960s in the US to describe closing down or reducing the number of beds in mental hospitals. The same process has been going on in many countries but with different names and in various forms. In Europe, countries like Italy prescribed by law an immediate ban on admitting patients to mental hospitals while in some other European countries psychiatric care was reorganized into a sectorized psychiatry characterized by open psychiatric care. This sectorization has not been studied to the same extent as the radical closures of mental hospitals, even though it entailed major changes in the organization of care. The deinstitutionalization in Sweden is connected to the sectorization of psychiatric care, a protracted process taking years to implement.

METHODS: Older people, with their first admission to psychiatric care before or after the sectorization process, were followed using three different time metrics: (a) year of first entry into a mental hospital, (b) total years of institutionalization, and (c) changes resulting from aging. Data from surveys in 1996, 2001, 2006, and 2011 were used, together with National registers.

RESULTS: Examination of date of first institutionalization and length of stay indicates a clear break in 1985, the year when the sectorization was completed in the studied municipality. The results show that the two groups, despite belonging to the same age group (birthyears 1910-1951, mean birthyear 1937), represented two different patient generations. The pre-sectorization group was institutionalized at an earlier age and accumulated more time in institutions than the post-sectorization group. Compared to the post-sectorization group, the pre-sectorization group were found to be disadvantaged in that their level of functioning was lower, and they had more unmet needs, even when diagnosis was taken into account.

CONCLUSIONS: Sectorization is an important divide which explains differences in two groups of the same age but with different institutional history: "modern" and "traditional" patient generations that received radically different types of care. The results indicate that the sectorization of psychiatric care might be as important as the Mental Health Care Reform of 1995, although a relatively quiet revolution.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2022
Keywords
Deinstitutionalization, Longitudinal, Older people, Sectorization, Severe mental illness
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:esh:diva-10994 (URN)10.1186/s13033-022-00544-9 (DOI)000824694400001 ()35831905 (PubMedID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, STYA‑2015/0003
Available from: 2022-07-18 Created: 2024-08-16Bibliographically approved
Nilsson, P., Joy Torge, C., Rolander, B. & Jegermalm, M. (2022). Former, förutsättningar och mål för anhörigstöd från anhörigkonsulenternas och biståndshandläggarnas perspektiv: Resultat från en webbaserad enkät i Region Jönköpings län och Region Stockholm. Jönköping: School of Health and Welfare, Jönköping University
Open this publication in new window or tab >>Former, förutsättningar och mål för anhörigstöd från anhörigkonsulenternas och biståndshandläggarnas perspektiv: Resultat från en webbaserad enkät i Region Jönköpings län och Region Stockholm
2022 (Swedish)Report (Other academic)
Abstract [sv]

Den här rapporten är en resa genom anhörigkonsulenters och biståndshandläggares erfarenheter, uppfattningar och förutsättningar för att bedriva anhörigstöd och vilka former av stöd som erbjuds anhöriga.

Studien baseras på en webbenkät utskickad till anhörigkonsulenter och biståndshandläggare i Jönköpings län och Stockholms län och vill bidra till en fördjupad kunskap och förståelse för den komplexitet som yrkesrollerna hanterar i sitt dagliga arbete med anhörigstöd.

Få studier har hittills gjorts ur det här perspektivet. Att sätta fokus på anhörigkonsulenterna är givet, men biståndshandläggarna möter också många anhöriga i sin yrkesutövning. Tillsammans ger de oss en bredare bild av de förutsättningar man har för att bedriva arbetet med anhörigstöd, vilka stödformer man erbjuder och vilka arbetsformer man använt under covid-19-pandemin. Vi får också en bild av i vilken utsträckning man når de anhöriga och i vilken omfattning man samarbetar med andra aktörer kring anhörigstöd. I studien har vi också ställt frågor om synen på vad socialtjänstens anhörigstöd kan och bör leda till.

Resultaten i studien är många och ur dem har vi identifierat fem utvecklingsområden som synliggör möjliga riktningar för kommunerna i arbetet med att utveckla anhörigstödet. På så sätt önskar vi bidra till att stärka det viktiga arbete som anhörigkonsulenter och biståndshandläggare gör dagligen för att underlätta vardagen för alla anhöriga de möter.

Place, publisher, year, edition, pages
Jönköping: School of Health and Welfare, Jönköping University, 2022. p. 73
Series
Jönköping University School of Health and Welfare Working Paper Series ; 1
Keywords
Anhörigstöd, Anhörigomsorg
National Category
Other Social Sciences
Identifiers
urn:nbn:se:esh:diva-10985 (URN)
Available from: 2024-08-05 Created: 2024-08-05 Last updated: 2024-08-12Bibliographically approved
Oscarsson, L. & Jegermalm, M. (2022). Medborgarnas informella insatser. In: Johan von Essen; Lars Svedberg (Ed.), Engagemangets gestaltningar: insatser i och utanför civilsamhället (pp. 129-162). Studentlitteratur AB
Open this publication in new window or tab >>Medborgarnas informella insatser
2022 (Swedish)In: Engagemangets gestaltningar: insatser i och utanför civilsamhället / [ed] Johan von Essen; Lars Svedberg, Studentlitteratur AB, 2022, p. 129-162Chapter in book (Other academic)
Place, publisher, year, edition, pages
Studentlitteratur AB, 2022
National Category
Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-9746 (URN)9789144143071 (ISBN)
Available from: 2022-08-30 Created: 2022-08-30 Last updated: 2022-08-30Bibliographically approved
Finkel, D., Bülow, P. H., Wilińska, M., Jegermalm, M., Torgé, C. J., Bravell, M. E. & Bülow, P. (2021). Does the length of institutionalization matter? Longitudinal follow-up of persons with severe mental illness 65 year and older: shorter-stay versus longer-stay. International Journal of Geriatric Psychiatry, 36(8), 1223-1230
Open this publication in new window or tab >>Does the length of institutionalization matter? Longitudinal follow-up of persons with severe mental illness 65 year and older: shorter-stay versus longer-stay
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2021 (English)In: International Journal of Geriatric Psychiatry, ISSN 0885-6230, E-ISSN 1099-1166, Vol. 36, no 8, p. 1223-1230Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: As part of the process of de-institutionalization in the Swedish mental healthcare system, a reform was implemented in 1995, moving the responsibility for services and social support for people with severe mental illness (SMI) from the regional level to the municipalities. In many ways, older people with SMI were neglected in this changing landscape of psychiatric care. The aim of this study is to investigate functional levels, living conditions, need of support in daily life, and how these aspects changed over time for older people with SMI.

METHODS: In this study we used data from surveys collected in 1996, 2001, 2006, and 2011 and data from national registers. A group of older adults with severe persistent mental illness (SMI-O:P) was identified and divided into those who experienced shorter stays (less than 3 years) in a mental hospital (N = 118) and longer stays (N = 117).

RESULTS: After correcting for longitudinal changes with age, the longer-stay group was more likely than the shorter-stay group to experience functional difficulties and as a result, were more likely to have experienced "re-institutionalization" to another care setting, as opposed to living independently.

CONCLUSIONS: The length of mental illness hospitalization has significant effects on the living conditions of older people with SMI and their ability to participate in social life. This article is protected by copyright. All rights reserved.

Keywords
Aging, Deinstitutionalization, Longitudinal studies, Re-institutionalization, Severe mental illness, Severe persistant mental illness
National Category
Social Work Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:esh:diva-8620 (URN)10.1002/gps.5515 (DOI)000621120500001 ()33577096 (PubMedID)
Available from: 2021-02-15 Created: 2021-02-15 Last updated: 2023-01-26Bibliographically approved
Finkel, D., Bülow, P. H., Wilińska, M., Jegermalm, M., Torgé, C. J., Ernsth Bravell, M. & Bülow, P. (2021). Does the length of institutionalization matter?: Longitudinal follow‐up of persons with severe mental illness 65 years and older: shorter‐stay versus longer‐stay. International Journal of Geriatric Psychiatry, 36(8), 1223-1230
Open this publication in new window or tab >>Does the length of institutionalization matter?: Longitudinal follow‐up of persons with severe mental illness 65 years and older: shorter‐stay versus longer‐stay
Show others...
2021 (English)In: International Journal of Geriatric Psychiatry, ISSN 0885-6230, E-ISSN 1099-1166, Vol. 36, no 8, p. 1223-1230Article in journal (Refereed) Published
Abstract [en]

Objectives: As part of the process of de-institutionalization in the Swedish mental healthcare system, a reform was implemented in 1995, moving the responsibility for services and social support for people with severe mental illness (SMI) from the regional level to the municipalities. In many ways, older people with SMI were neglected in this changing landscape of psychiatric care. The aim of this study is to investigate functional levels, living conditions, need of support in daily life, and how these aspects changed over time for older people with SMI.

Methods: In this study we used data from surveys collected in 1996, 2001, 2006, and 2011 and data from national registers. A group of older adults with severe persistent mental illness (SMI-O:P) was identified and divided into those who experienced shorter stays (less than 3 years) in a mental hospital (N = 118) and longer stays (N = 117).

Results: After correcting for longitudinal changes with age, the longer-stay group was more likely than the shorter-stay group to experience functional difficulties and as a result, were more likely to have experienced 're-institutionalization' to another care setting, as opposed to living independently.

Conclusions: The length of mental illness hospitalization has significant effects on the living conditions of older people with SMI and their ability to participate in social life.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2021
Keywords
Ageing, Deinstitutionalization, Longitudinal studies, Re-institutionalization, Severe mental illness, Severe persistent mental illness
National Category
Social Work Gerontology, specialising in Medical and Health Sciences
Identifiers
urn:nbn:se:esh:diva-10990 (URN)10.1002/gps.5515 (DOI)33577096 (PubMedID)
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare
Available from: 2024-08-15 Created: 2024-08-15 Last updated: 2024-08-15Bibliographically approved
Skinner, M. S., Lorentzen, H., Tingvold, L., Sortland, O., Andfossen, N. B. & Jegermalm, M. (2021). Volunteers and Informal Caregivers' Contributions and Collaboration with Formal Caregivers in Norwegian Long-term Care. Journal of Aging & Social Policy, 33(6), 647-672
Open this publication in new window or tab >>Volunteers and Informal Caregivers' Contributions and Collaboration with Formal Caregivers in Norwegian Long-term Care
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2021 (English)In: Journal of Aging & Social Policy, ISSN 0895-9420, E-ISSN 1545-0821, Vol. 33, no 6, p. 647-672Article in journal (Refereed) Published
Abstract [en]

The article illuminates and discusses the realism of policy-makers' goals to increase involvement of volunteers and informal caregivers in long-term care services in Norway. Drawing on multiple data sources, the article investigates how commonplace volunteering and informal care are in long-term care, and it explores challenges experienced in collaboration between formal caregivers and volunteers and informal caregivers. The results show that only 4.4 percent of the Norwegian population carry out unpaid, voluntary work in long-term care. Twenty percent regularly provide informal care to someone with special care needs. Knowledge/information gaps and lacking coordination are common collaboration challenges between formal caregivers and volunteers/informal caregivers. The limitations identified in the current collaboration environment should be used actively by both policy makers and the practice field to critically assess goals and strategies for involvement and improving collaboration practices.

Keywords
Caregivers, Nordic, Norway, Health personnel, Informal care, Intersectoral collaboration, Long-term care, Municipalities, Unpaid work, Volunteers
National Category
Sociology Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:esh:diva-9294 (URN)10.1080/08959420.2020.1745988 (DOI)000526260000001 ()32252614 (PubMedID)
Funder
The Research Council of Norway, 222312
Available from: 2021-12-29 Created: 2021-12-29 Last updated: 2023-01-26Bibliographically approved
Projects
Swedish civic engagement: a study of change and continutiy [2011-06713_VR]; Marie Cederschiöld University
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-9702-2043

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