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Life-sharing experiences of relatives of persons with severe mental illness: a phenomenographic study
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.ORCID iD: 0000-0003-3385-3731
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing. (Omvårdnad)
2013 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 27, no 1, 99-107 p.Article in journal (Refereed) Published
Abstract [en]

Scand J Caring Sci; 2012; Life-sharing experiences of relatives of persons with severe mental illness - a phenomenographic study Relatives of those suffering from severe mental illness experience multiple challenges and a complex life situation. The aim of this study was to describe life-sharing experiences from the perspective of relatives of someone with severe mental illness. A qualitative, descriptive study was performed, and interviews were carried out with eighteen relatives of persons with severe mental illness. A phenomenographic analysis, according to the steps described by Dahlgren and Fallsberg, was used to describe the relatives' conceptions of their situation. The findings show that the experiences of these relatives can be summarized in one main category: 'The art of balancing between multiple concerns'. Two descriptive categories emerged: 'Making choices on behalf of others and oneself' and 'Constantly struggling between opposing feelings and between reflections'. Relatives report that they have to manoeuvre between different ways to act and to prioritize between different wishes and needs. In addition, they face a wide range of strong feelings and they search for hope and meaning. Relatives of someone with severe mental illness have to balance multiple concerns, which induce ethical dilemmas. They felt love, compassion or sense of duty towards the mentally ill person. The changeable situation made it difficult for the relatives to establish a balance in their lives. To be able to prioritize some private time was important. Relatives need own support and sufficient follow-up of the mentally ill next of kin from the mental health services.

Place, publisher, year, edition, pages
2013. Vol. 27, no 1, 99-107 p.
National Category
Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:kau:diva-13689DOI: 10.1111/j.1471-6712.2012.01007.xISI: 000314819900015PubMedID: 22583154OAI: oai:DiVA.org:kau-13689DiVA: diva2:533780
Available from: 2012-06-14 Created: 2012-06-14 Last updated: 2016-04-13Bibliographically approved
In thesis
1. Experiences and Nursing Support of Relatives of Persons with Severe Mental Illness
Open this publication in new window or tab >>Experiences and Nursing Support of Relatives of Persons with Severe Mental Illness
2012 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[no]
Pårørende til personer med alvorlig psykisk lidelse : Deres erfaringer og støtte fra sykepleiere
Abstract [en]

Aim: The overall aim of this thesis was to illuminate experiences of relatives of persons with severe mental illness, and their need for support from formal care. Furthermore, to illuminate nursing support of relatives of persons with severe mental illness.

Methods: A mixed methods design was used. In study I, data was collected with a questionnaire responded by 226 relatives and analysed with statistics. In study II, data was gathered with interviews with a strategic sample of 18 relatives, analysed with phenomenography. Study III gathered data from 216 relatives using open-ended questions in the questionnaire (I), analysed with qualitative content analysis. In study IV, data was collected by means of focus-group interviews with 4 groups of nurses, working in mental healthcare and analysed with phenomenography.

Main findings: The relatives experienced that their lives were intertwined with the life of their severely mentally ill next of kin. The relatives experienced burden and a poor health, and there were associations between burden and health (I). The relatives had to balance between multiple concerns and make choices on behalf of others and themselves, constantly struggling between opposing feelings and between reflections (II). Relatives’ encounters with mental health personnel were mainly negative, although some had positive experiences. They strived for involvement in mental healthcare for the sake of their severely mentally ill next of kin, and wanted inclusion and support for their own sake, but mostly felt left alone with straining but inescapable responsibilities (III). The nurses conceived that their responsibility was first and foremost the patient and to develop an alliance with him or her. The nurses often felt they had to exclude relatives, but were sometimes able to support them (IV).

Conclusions: Relatives’ lives are intertwined with the life of their severely mentally ill next of kin. Relatives’ overall demanding life situation means that the mental health services must involve relatives for the sake of the severely mentally ill person but also include them for their own sake. They need practical and emotional support. Guidelines must be designed to address relatives’ needs, and support must be adapted to the individual relative.

Abstract [no]

Hensikt: Avhandlingens overordnete hensikt var å belyse erfaringer med å være pårørende til personer med alvorlig psykisk lidelse, og deres behov for støtte fra helsevesenet. Videre å belyse støtte fra sykepleiere til pårørende til personer med alvorlig psykisk lidelse.

Metode: Mixed methods design ble benyttet. I studie I ble data samlet med spørreskjema besvart av 226 pårørende, og analysert med statistikk. I studie II ble data samlet ved hjelp av intervju med et strategisk utvalg av 18 pårørende, analysert med fenomenografi. I studie III ble data samlet gjennom åpne spørsmål i et spørreskjema (I), besvart av 216 pårørende og analysert med kvalitativ innholdsanalyse. I studie IV ble data samlet ved hjelp av fokusgruppeintervju med 4 grupper sykepleiere fra psykisk helsevern, analysert med fenomenografi.

Hovedfunn: Pårørende opplevde at deres liv var sammenvevd med livet til den som hadde en alvorlig psykisk lidelse. De pårørende opplevde byrde og dårlig helse, og det var sammenheng mellom byrde og helse (I). De pårørende måtte balansere en rekke hensyn, gjøre valg på vegne av andre og seg selv, og samtidig kjempe med motstridende følelser og motstridende tanker (II). Pårørendes erfaringer med møter med helsepersonell i psykisk helsevern var hovedsakelig negative, men noen hadde positive opplevelser. De strevde for å bli involvert i behandlingen for familiemedlemmet med den alvorlige psykiske lidelsen sin del, de ønsket å bli inkludert og motta støtte for egen del, men følte seg overlatt med strevsomt ansvar som de ikke kunne unnslippe (III). Sykepleierne anså at deres ansvar først og fremst var overfor pasienten, og å skape en allianse med vedkommende. Sykepleierne opplevde ofte at de måtte ekskludere pårørende, men var noen ganger i stand til å støtte dem (IV).

Konklusjoner: Pårørendes liv er sammenvevd med livet til den som har en alvorlig psykisk lidelse. Pårørendes krevende livssituasjon innebærer at psykisk helsevern må involvere dem for den som har den alvorlige psykiske lidelsen, samt inkludere pårørende for deres egen del. De har behov for praktisk og emosjonell støtte. Retningslinjer må på plass for å ivareta pårørendes behov, og støtten må tilpasses den enkelte pårørende

Place, publisher, year, edition, pages
Karlstad: Karlstads universitet, 2012. 150 p.
Series
Karlstad University Studies, ISSN 1403-8099 ; 2012:17
Keyword
Burden, everyday life, health, mental healthcare, relational ethics, relatives of persons with severe mental illness, support of relatives, Byrde, dagligliv, helse, nærhetsetikk, psykisk helsevern, pårørende til personer med alvorlig psykisk lidelse, støtte til pårørende
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-12821 (URN)978-91-7063-421-5 (ISBN)
Public defence
2012-09-14, 1A 305 Lagerlöfsalen, Karlstad, 11:00 (Norwegian)
Opponent
Supervisors
Available from: 2012-08-24 Created: 2012-04-03 Last updated: 2016-04-13Bibliographically approved

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