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Me-ness and we-ness in a modified everyday life close to death at home
Ersta Sköndal University College, Enheten för forskning i palliativ vård.
2011 (English)Doctoral thesis, comprehensive summary (Other academic)
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.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet , 2011. , 70 p.
Keyword [en]
life-threatening illness, everyday life, home, identity, self-image, dying, death, family, transition, narrative, interpretive description, secondary analysis
National Category
Medical and Health Sciences
Research subject
Palliativ vård
Identifiers
URN: urn:nbn:se:esh:diva-1207ISBN: 978-91-7457-326-8OAI: oai:DiVA.org:esh-1207DiVA: diva2:421600
Public defence
2011-06-17, H2 Grön, Alfred Nobels allé 23, Stockholm, 09:59 (Swedish)
Opponent
Supervisors
Available from: 2011-06-09 Created: 2011-06-09 Last updated: 2011-06-13Bibliographically approved
List of papers
1. The modified self: family caregivers' experiences of caring for a dying family member at home
Open this publication in new window or tab >>The modified self: family caregivers' experiences of caring for a dying family member at home
2011 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 7-8, 1097-1105 p.Article in journal (Refereed) Published
Abstract [en]

Aim: The aim of this study was to explore situations in daily life that challenge caregivers’ self-image when caring for a dying family member at home.

Background: Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding on the influence it has on the caregivers self-image.

Design: Qualitative descriptive study.

Methods: Ten family caregivers who cared for a dying family member at home with support from an advanced homecare team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description.

Result: Three patterns characterised the experiences of caregivers’ daily lives in caring for a dying family member at home: challenged ideals, stretched limits, and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers’ self-image were connected to experiences such as “forbidden thoughts”, intimacy, and decreasing personal space.

Conclusions: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home.

Relevance to clinical practice: The present study argues for supporting family caregivers to maximize their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers’ self-image, and points out the importance of talking about caregiving experiences. From a clinical perspective the present study emphasizes the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as “forbidden thoughts” can be one way of handling the profoundly changed every day life.

Keyword
caregivers, death and dying, home nursing, palliative care, qualitative research, self-concept
National Category
Nursing
Research subject
Palliative care
Identifiers
urn:nbn:se:esh:diva-1196 (URN)10.1111/j.1365-2702.2010.03331.x (DOI)
Available from: 2011-06-08 Created: 2011-06-08 Last updated: 2015-11-04Bibliographically approved
2. Being me and being us in a family living close to death at home
Open this publication in new window or tab >>Being me and being us in a family living close to death at home
Show others...
2011 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 21, no 5, 683-695 p.Article in journal (Refereed) 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.

Keyword
death and dying, families, illness and disease, interpretive methods, palliative care, self, social identity
National Category
Nursing
Research subject
Palliative care
Identifiers
urn:nbn:se:esh:diva-1197 (URN)10.1177/1049732310396102 (DOI)
Available from: 2011-06-09 Created: 2011-06-08 Last updated: 2015-11-04Bibliographically approved
3. Four aspects of self-image close to death at home
Open this publication in new window or tab >>Four aspects of self-image close to death at home
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2011 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, Vol. 6, no 2, 5931- p.Article in journal (Refereed) Published
Abstract [en]

Living close to death means an inevitable confrontation with one’s own existential limitation. In this article, we argue that everyday life close to death embodies an identity work in progress. We used a narrative approach and a holistic-content reading to analyze twelve interviews conducted with three persons close to death. By illuminating the unique stories and identifying patterns among the participants’ narratives, we found four themes exemplifying important aspects of the identity work related to everyday life close to death. Two of the themes, named “Inside and outside of me” and “Searching for togetherness”, represented the core of the self-image, and were framed by the other themes, “My place in space” and “My death and my time”. Our findings elucidate the way the individual stories moved between the past, the present, and the future. This study challenges the idea that everyday life close to impending death primarily means limitations. The findings show that the search for meaning, new knowledge, and community can form a part of a conscious and ongoing identity work close to death. 

National Category
Medical and Health Sciences
Research subject
Palliative care
Identifiers
urn:nbn:se:esh:diva-1206 (URN)10.3402/qhw.v6i2.5931 (DOI)
Projects
Death and dying, identity, narrative research, palliative care, qualitative inquiry,self-image
Available from: 2011-06-09 Created: 2011-06-09 Last updated: 2015-11-04Bibliographically approved

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