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Being me and being us in a family living close to death at home
Ersta Sköndal högskola, Enheten för forskning i palliativ vård.
Ersta Sköndal högskola, Enheten för forskning i palliativ vård.
Hälsoakademin, Örebro universitet.
Linköpings universitet, .ORCID-id: 0000-0001-8007-1770
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2011 (Engelska)Ingår i: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 21, nr 5, s. 683-695Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that everyone in the family individually had to deal with the impending death, regardless of whether he or she was the person with the life-threatening illness or not. This was linked to ways of promoting the own self-image, of “me-ness.” This pattern was present at the same time as the pattern of “being us,” in other words, being a family, and dealing with impending death and a new “we-ness,” as a group. “Striving for the optimal way of living close to death” was the core theme.

Ort, förlag, år, upplaga, sidor
2011. Vol. 21, nr 5, s. 683-695
Nyckelord [en]
death and dying, families, illness and disease, interpretive methods, palliative care, self, social identity
Nationell ämneskategori
Omvårdnad
Identifikatorer
URN: urn:nbn:se:esh:diva-1197DOI: 10.1177/1049732310396102OAI: oai:DiVA.org:esh-1197DiVA, id: diva2:421586
Tillgänglig från: 2011-06-09 Skapad: 2011-06-08 Senast uppdaterad: 2020-06-03Bibliografiskt granskad
Ingår i avhandling
1. Me-ness and we-ness in a modified everyday life close to death at home
Öppna denna publikation i ny flik eller fönster >>Me-ness and we-ness in a modified everyday life close to death at home
2011 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
Abstract [en]

The overarching aim of this thesis was to describe how family members experienced everyday life with life-threatening illness close to death, with focus on self-image and identity. The thesis comprises four papers, each with a specific aim to illuminate various aspects of the phenomenon under study. The study population consisted of 29 participants; ten family caregivers and five families, including five patients with life threatening illness and their family members. Data were based on retrospective single interviews (paper I), prospective individual, couple and group interviews with the families over six to eighteen month (papers II-III). Interpretive description approach (papers I, II, IV), narrative method (paper III) and secondary analysis (paper IV) were used to analyze data. The findings show how living close to death influences everyday life at home, at several levels (papers I-IV). From the perspective of the dying person, narrations of daily situations was described by four themes related to identity and everyday life; inside and outside of me, searching for togetherness, my place in space and my death and my time. The changing body, pain, fatigue, decreased physical capacity and changed appearance, appeared to influence the dying person’s need for altered knowledge and community, and as a result the patterns of interaction within the families changed. The strive for knowledge and community took place at home, an arena for identity work and the conscious search for meaning, knowledge and community; it was limited by time and inevitable death (paper III). For the family member, life close to death can mean sharing life with a changing person in a changing relationship (paper II). It may mean that everyday life needs to be modified in order for it to work (papers I-IV). New patterns of dependence and an asymmetrical relationship affect all involved (papers III-IV). Daily life close to death is about finding the space to promote the individual self-image, me-ness, at the same time as finding new ways of being a family; we-ness (paper II). Regardless of being the ill person or not, the family members we interviewed had to face impending death, which challenged earlier ways of living together (papers I-IV). From the perspective of the relatives, the everyday life of caring for the dying family member was characterized by challenged ideals, stretched limits and interdependency (paper I). Situations that challenged the caregivers’ self-image were connected to intimacy, decreasing personal space and experiences such as “forbidden thoughts”. The findings suggest that the bodily changes were of importance for the self-image, and that the former approach to the own body was important in the process of experiencing the body. The person living close to death was in transition to something new; being dead in the near future. One way of handling the struggles of everyday life was to seek togetherness, strive to find other persons with similar experiences while sharing thoughts and feelings. Togetherness was sought within the family, in the health care system and on the internet; a sense of togetherness was also sought with those who had already died. The other family members were also in transition as the future meant living on without the ill family member and changing their status to for example being a widow or being motherless. Identity work close to death denotes creating an access ramp into something new; a transition into the unknown. From a clinical perspective, this study emphasizes the significance of creating a climate that allows caregivers to express thoughts and feelings.

Ort, förlag, år, upplaga, sidor
Stockholm: Karolinska Institutet, 2011. s. 70
Nyckelord
life-threatening illness, everyday life, home, identity, self-image, dying, death, family, transition, narrative, interpretive description, secondary analysis
Nationell ämneskategori
Medicin och hälsovetenskap
Identifikatorer
urn:nbn:se:esh:diva-1207 (URN)978-91-7457-326-8 (ISBN)
Disputation
2011-06-17, H2 Grön, Alfred Nobels allé 23, Stockholm, 09:59 (Svenska)
Opponent
Handledare
Tillgänglig från: 2011-06-09 Skapad: 2011-06-09 Senast uppdaterad: 2020-06-03Bibliografiskt granskad

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Carlander (Goliath), IdaTernestedt, Britt-MarieHellström, IngridSandberg, Jonas

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