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Experiences and Nursing Support of Relatives of Persons with Severe Mental Illness
Karlstad University, Faculty of Social and Life Sciences, Department of Nursing.
2012 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Pårørende til personer med alvorlig psykisk lidelse : Deres erfaringer og støtte fra sykepleiere (Norwegian)
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 [en]
Burden, everyday life, health, mental healthcare, relational ethics, relatives of persons with severe mental illness, support of relatives
Keyword [no]
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: urn:nbn:se:kau:diva-12821ISBN: 978-91-7063-421-5 (print)OAI: oai:DiVA.org:kau-12821DiVA: diva2:513882
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
List of papers
1. Burden and health in relatives of persons with severe mental illness: A Norwegian cross-sectional study
Open this publication in new window or tab >>Burden and health in relatives of persons with severe mental illness: A Norwegian cross-sectional study
2010 (English)In: Issues in Mental Health Nursing, ISSN 0161-2840, Vol. 31, no 12, 804-815 p.Article in journal (Refereed) Published
Abstract [en]

This study describes and investigates burden to and health of relatives of persons with severe mental illness in relation to background variables, everyday life with the mentally ill person, and sense of coherence. A cross-sectional design was used. The respondents were 226 relatives from the Norwegian National Association for Families of Mentally Ill Persons. In addition to background variables and variables about everyday life with the mentally ill person, the questionnaire was comprised of the Burden Assessment Schedule (BAS), Short Form Health Survey (SF-36), and Sense of Coherence Instrument (SOC). This study shows that the relatives were burdened and also reported poor health. Greater burden was experienced by women and by relatives who did not have anyone with whom to share the caregiving of the mentally ill person. For relatives who were single, divorced, or widowed, burden was greater and health was poorer; likewise for relatives who reported financial problems and frequent phone calls with the mentally ill person. Burden and poor health were associated with low SOC. The findings suggest a need for the health services to include and support these relatives in order for them to sustain health.

National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-10296 (URN)10.3109/01612840.2010.520819 (DOI)
Available from: 2012-02-08 Created: 2012-02-08 Last updated: 2016-04-13Bibliographically approved
2. Life-sharing experiences of relatives of persons with severe mental illness: a phenomenographic study
Open this publication in new window or tab >>Life-sharing experiences of relatives of persons with severe mental illness: a phenomenographic study
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.

National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-13689 (URN)10.1111/j.1471-6712.2012.01007.x (DOI)000314819900015 ()22583154 (PubMedID)
Available from: 2012-06-14 Created: 2012-06-14 Last updated: 2016-04-13Bibliographically approved
3. Left alone with straining but inescapable responsibilities: relatives' experiences with mental health services
Open this publication in new window or tab >>Left alone with straining but inescapable responsibilities: relatives' experiences with mental health services
2011 (English)In: Issues in Mental Health Nursing, ISSN 0161-2840, Vol. 32, no 11, 703-710 p.Article in journal (Refereed) Published
Abstract [en]

Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.

National Category
Nursing
Identifiers
urn:nbn:se:kau:diva-12611 (URN)10.3109/01612840.2011.598606 (DOI)
Available from: 2012-03-28 Created: 2012-03-28 Last updated: 2016-04-13Bibliographically approved
4. Nurses’ dilemmas concerning support of relatives in mental health care
Open this publication in new window or tab >>Nurses’ dilemmas concerning support of relatives in mental health care
2013 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 20, no 3, 285-299 p.Article in journal (Refereed) Published
Abstract [en]

Relatives of persons with severe mental illness face a straining life situation, and need support. Exclusion of relatives in mental healthcare has long been reported. The aim of this study was to describe conceptions of nurses in mental health care about supporting relatives of persons with severe mental illness.

Focus group interviews with nurses from all levels of mental healthcare in Norway were performed. A Phenomenographic approach was used. The nurses found that their responsibility first and foremost was the patient, especially to develop an alliance with him or her. Additional premises for supporting relatives were: The context framing the nursing care, the aspects of the actors, and relational concerns between them. Competing or contradictory demands were found within these premises.

Two paths were identified concerning the nurses’ support of relatives: seeing the relative in the shadow of the patient, or as an individual person.

Keyword
focus group interviews, moral distress, nurses in mental health care, phenomenography, relatives of persons with severe mental illness, support.
National Category
Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:kau:diva-13690 (URN)000341633900005 ()23361144 (PubMedID)
Note

Delarbete i avhandlingen: Relatives of persons with severe mental illness - life situation and need for support, Karlstad university studies 2012:17

Available from: 2012-06-14 Created: 2012-06-14 Last updated: 2016-04-13Bibliographically approved

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