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En tillvaro av utanförskap: En longitudinell studie om att vara i medelåldern och närstående till en person som insjuknat i stroke
Mid Sweden University, Faculty of Human Sciences, Department of Health Sciences.
2010 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [sv]

Ett övergripande syfte med avhandling var att belysa den levda erfarenheten av att vara i medelåldern och närstående till en person som insjuknat i stroke för första gången och studera de närståendes erfarenheter av förändringen över tid under det första året efter utskrivning till hemmet, samt att belysa innebörden av medelålders makars levda erfarenhet av relationen till en partner som insjuknat i stroke; under det första året. Avhandlingen omfattar 4 delstudier (I-IV) som sammantaget utgör en longitudinell studie. Tio närstående (40 - 64 år) till personer insjuknade i stroke (förstagångs insjuknande) med förväntat hjälpbehov överstigande 6 månader, inkluderades konsekutivt i studien och följdes under ett år efter utskrivning till hemmet. Narrativa intervjuer utfördes en månad (I, n=10), sex månader (II, n=9) och ett år (III, n=9) efter utskrivning till hemmet. Bland de närstående i delstudie I-III fanns fyra kvinnliga makar (gifta; n=2, sambo; n=2) som utgjorde deltagarna i delstudie IV. För att analysera data användes en fenomenologisk hermeneutisk tolkningsmetod (I, IV) och kvalitativ innehållsanalys (II, III).

Avhandlingen visar på att vara i medelåldern och närstående till en person som insjuknat i stroke, efter utskrivningen till hemmet, innebär att gå igenom en förändringsprocess i olika steg. Upplevelsen var att en månad efter utskrivningen kämpa för att inte tappa fotfästet i en otrygg livssituation, där de upplevde ett främlingskap inför situationen, sig själv och personen som insjuknat i stroke. Ändå svarade de närstående oreflekterat an ett krav på ansvar och omsorg (I, IV). Efter sex månader visade de närstående på en kamp för att integrera förändringarna orsakade av stroke till det dagliga livet, förlika sig med förlusterna och att hitta balans och en ny normalitet (II). Makarna förde en kamp för att återfå känslan av samhörighet med sin partner och hitta tillbaka till sin egen identitet som maka, vilket bara var möjligt i frånvaro av en vårdarroll (II, IV). Efter ett år tvingades de närstående att erkänna, lära sig hantera och förlika sig med förändringarna orsakade av strokeinsjuknandet (III). Makarna fick lämna en ‛bild‛ av hur deras partner en gång varit. En trygg relation i samvaro och jämlikhet med en känsla av ‛vi‛ förändrades och blev främmande och ojämlik och ersattes med en känsla av ‛jag‛ och ‛du‛. För att härda ut måste makarna omvärdera relationen till sin partner och målen i livet. Även om partnern fortfarande var i livet visade makarna en sorg och ett lidande beroende på förlusten av den relation de en gång haft till personen som insjuknat i stroke (IV). Avhandlingen visar även att de närstående inte upplevde sig varit sedda och bekräftade av den professionella vårdpersonalen i sin egen situation som närstående. Vårdens fokus upplevdes hela tiden enbart vara den sjuke och främst de fysiska förändringarna hos personen med stroke. De närståendes upplevelse var av oförståelse för innebörden av de kognitiva och emotionella förändringarna hos den sjuke (I, II, III). De närstående gav så småningom också upp sin strävan att bli bekräftade vilket innebar att bära på ett lidande som inte blev synliggjort (III). En annan del av förändringsprocessen var att de närstående gick ifrån självförnekelse med fokus på den som insjuknat och nuet (I), till en medvetenhet om att ta egna behov i beaktande (II) och att även fokusera på eget välbefinnande för att orka i en framtid (III). Avhandlingen visar att de medelålders närstående går igenom en transitionsprocess, där upplevelser av förluster, förändringar, lidande och sorg finns relaterat till; dåtid, nutid och framtid. De närståendes upplevelse av oförståelse och brist på känsla av bekräftelse i deras livssituation under året efter utskrivningen till hemmet, kan leda till en känsla av ensamhet och övergivenhet både inom de närstående själva, men också i förhållande till andra och världen utanför.

Place, publisher, year, edition, pages
Sundsvall: Mittuniversitetet , 2010.
Series
Mid Sweden University doctoral thesis, ISSN 1652-893X ; 77
Keywords [sv]
familj, fenomenologisk hermeneutik, kvalitativ innehållsanalys, lidande, makar, medelålder, närstående, relation, sorg, stroke.
National Category
Nursing
Identifiers
URN: urn:nbn:se:miun:diva-10791ISBN: 978-91-86073-63-3 (print)OAI: oai:DiVA.org:miun-10791DiVA, id: diva2:283497
Public defence
(English)
Supervisors
Available from: 2009-12-28 Created: 2009-12-28 Last updated: 2009-12-28Bibliographically approved
List of papers
1. The meaning of being a middle-aged close relative of a person who has suffered a stroke, 1 month after discharge from a rehabilitation clinic
Open this publication in new window or tab >>The meaning of being a middle-aged close relative of a person who has suffered a stroke, 1 month after discharge from a rehabilitation clinic
2007 (English)In: Nursing Inquiry, ISSN 1320-7881, E-ISSN 1440-1800, Vol. 14, no 3, p. 243-254Article in journal (Refereed) Published
Abstract [en]

The sudden and unexpected impact of stroke may have a stressful affect on close relatives. To illuminate the essential meaning in the lived experience of a middle-aged close relative of a person who has suffered a stroke, narrative interviews were conducted with 10 close relatives of people who had suffered their first stroke where both parties were aged over 18 and under 65. A phenomenological-hermeneutic interpretation of the narratives was then conducted. Three intimately intertwined themes emerged during the analysis: 'being called to mission', 'feeling lost and set adrift' and 'struggling to keep going'. The middle-aged close relatives felt unreflectively duty bound. There was a struggle with suffering and enduring the process of coping with life and overcoming a feeling of helplessness. Life turned out to be a struggle with overwhelming feelings. They felt alienated in a restricted life situation, disconnected from themselves and others, and from a world that supports feelings of being lost and set adrift (i.e. feeling homeless). Strength was found in moments when the situation improved, in being related to oneself and others, and when feelings of normality were regained.

Keywords
Närstående, Relatives
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-1368 (URN)10.1111/j.1440-1800.2007.00373.x (DOI)000249194100008 ()17718750 (PubMedID)2-s2.0-34548132713 (Scopus ID)5019 (Local ID)5019 (Archive number)5019 (OAI)
Available from: 2008-09-30 Created: 2009-01-08 Last updated: 2017-12-13Bibliographically approved
2. The experience of being a middle-aged close relative of aperson who has suffered a stroke – six months after discharge from a rehabilitation clinic
Open this publication in new window or tab >>The experience of being a middle-aged close relative of aperson who has suffered a stroke – six months after discharge from a rehabilitation clinic
2010 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 24, no 1, p. 116-124Article in journal (Refereed) Published
Abstract [en]

The experience of being a middle-aged close relative of a person who has suffered a stroke - six months after discharge from a rehabilitation clinicBeing a close relative brings with it a large number of consequences, with the life situation changing over time. The aim of this study was to illuminate the experiences of being a middle-aged close relative of a person who has suffered a stroke 6 months after being discharged from a medical rehabilitation clinic. Narrative interviews were conducted with nine middle-aged close relatives and analysed using a content analysis with a latent approach. The analysis revealed that being close to someone who had suffered a stroke 6 months after discharge meant; a struggling for control and a renewal of family life in the shadow of suffering and hope. The middle-aged close relatives began to perceive the changed reality. They were struggling to take on something new, become reconciled and find a balance in their family life. Their ability to work, relief from caring concerns and having support and togetherness with others seemed to be essential for the close relatives in their efforts to manage their life situation and maintain their well-being. Having reached the 'halfway point' in their lives and still with half of their life in front of them created worries. They felt dejected about their changed relationships and roles, experience a sense of loss of shared child responsibilities, a negative impact on their marital relationships and sexual satisfaction. They felt trapped in a caring role and they worried about how to endure in the future. The middle-aged close relatives' experiences were of being alone and neglected, in an arduous and complex life situation filled with loss and grief. The findings highlights that health professionals need to see and listen to the close relatives' experiences of transition in order to provide appropriate support adjusted to their varying needs during a time of renewal.

Keywords
close relatives, content analysis, middle-aged, stroke
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-8118 (URN)10.1111/j.1471-6712.2009.00694.x (DOI)000274389900015 ()19497028 (PubMedID)2-s2.0-76549101410 (Scopus ID)
Available from: 2009-12-28 Created: 2009-01-08 Last updated: 2017-12-14Bibliographically approved
3. The experience of being a middle-aged close relative of a person who has suffered a stroke, 1 year after discharge from a rehabilitation clinic: A qualitative study
Open this publication in new window or tab >>The experience of being a middle-aged close relative of a person who has suffered a stroke, 1 year after discharge from a rehabilitation clinic: A qualitative study
2009 (English)In: International Journal of Nursing Studies, ISSN 0020-7489, E-ISSN 1873-491X, Vol. 46, no 11, p. 1475-1484Article in journal (Refereed) Published
Abstract [en]

Background

Living in close emotional and physical proximity to a person who has suffered a stroke may alter almost every aspect of daily living and will inevitably impact family life. Age seems to be a factor in the experiences of stroke sufferers’ close relatives after the stroke.

Objectives

This study aimed to illuminate the experience of being a middle-aged close relative of a person who has suffered a stroke; 1 year after the stroke sufferer's discharge from a rehabilitation clinic.

Participants

Nine middle-aged close relatives of persons with a confirmed diagnosis of a first-time stroke were consecutively included in the study and interviewed.

Methods

The narrative interviews were audio-taped, transcribed verbatim and analyzed using a thematic content analysis. The study was part of a longitudinal study.

Results

Four themes emerged from the data, intertwined and in conflict with one another. A turning point was reached, and the inevitability of an altered future became self-evident, so much so that the middle-aged close relatives felt forced to accept and become reconciled to a changed way of living, even if feelings of grief from loss were still present. The middle-aged close relatives’ process of coming to awareness and recognition of their own needs was part of a complex interplay of emotions, in which they learned to leave feelings of shame and guilt behind. They experienced movement from self-denial to self-recognition in their search for their own well-being and the recovery of their strength for a functioning family life. Even if they experienced a greater sense of freedom, they still face living life within limits. A significant challenge appears to be the effects of the personality changes among the person with a stroke, and the resulting sense of being an outsider. Relatives struggled with health care providers for visibility and confirmation. Their experiences were ones of standing alone, outside a closing door to the rehabilitation. Their ability to work, the benefits of functioning home care, and support from their family helped them through these challenges.

Conclusion

This study highlights the middle-aged relatives’ realization that they will live an inevitability altered future. Individually, the stroke sufferer's relatives need support in their relationships within the family for emotional confirmation and to help them recognize and verbalize their needs without feeling guilt; gaining these supportive factors may help the relatives to recover their sense of well-being and give strength for a future, properly functioning family life.

Keywords
Caregivers; Family; Life experiences; Middle aged; Qualitative research; Stroke
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-9246 (URN)10.1016/j.ijnurstu.2009.04.009 (DOI)000270620000009 ()19477447 (PubMedID)2-s2.0-69949092675 (Scopus ID)
Available from: 2009-07-08 Created: 2009-07-08 Last updated: 2017-12-13Bibliographically approved
4. The meaning of middle-aged female spouses' lived experience of the relationship with a partner who has suffered a stroke, during the first year postdischarge
Open this publication in new window or tab >>The meaning of middle-aged female spouses' lived experience of the relationship with a partner who has suffered a stroke, during the first year postdischarge
2010 (English)In: Nursing Inquiry, ISSN 1320-7881, E-ISSN 1440-1800, Vol. 17, no 3, p. 257-268Article in journal (Refereed) Published
Abstract [en]

Stroke consequences present a great long-term challenge to the spouses of the stroke sufferer. A longitudinal study with a phenomenological hermeneutic approach was used to illuminate the meanings of middle-aged female spouses' lived experience of their relationship with a partner who has suffered a stroke, during the first year postdischarge. Four middle-aged female spouses of stroke sufferers participated in the study. Narrative interviews were conducted 1, 6 and 12 month postdischarge (total of 12 interviews), audio-taped and transcribed verbatim to a text and interpreted by a phenomenological hermeneutic method inspired by Ricoeur. The findings showed a process over time during which spouses come to know, recognize and acknowledge the residual changes in their partners' cognitive and emotional conditions and the impact on their relationship. Spouses showed grief due to the loss of the marital relationship they once had and anxiety that they would not be able to continue in an undesired relationship in the future. Even if the partner is still alive, there is a loss to grieve and to be understood, an important meaning of the transition process in the relationship during the first year after the partner's discharge.

Keywords
female; lived experiences; phenomenological hermeneutics; spouses; stroke
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-10792 (URN)10.1111/j.1440-1800.2010.00490.x (DOI)000280998500009 ()20712664 (PubMedID)2-s2.0-77955746328 (Scopus ID)
Available from: 2009-12-28 Created: 2009-12-28 Last updated: 2017-12-12Bibliographically approved

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