| 1. |
- Carlander (Goliath), Ida, 1968-, et al.
(författare)
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Being Me and Being Us in a Family Living Close to Death at Home
- 2011
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Ingår i: Qualitative Health Research. - : Sage Publications Inc. - 1049-7323 .- 1552-7557. ; 21:5, s. 683-695
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Tidskriftsartikel (refereegranskat)abstract
- 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 every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual’s self-image, or “me-ness.” This pattern was present at the same time as the pattern of “being us,” or 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.
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| 2. |
- Carlander (Goliath), Ida, et al.
(författare)
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Constructing family identity close to death
- 2013
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Ingår i: Open Journal of Nursing. - : Scientific Research Publishing, Inc.. - 2162-5336 .- 2162-5344. ; 3:5, s. 379-388
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Tidskriftsartikel (refereegranskat)abstract
- Daily life close to death involves physical, psychological, and social strain, exposing patients and their family members to major transitions affecting relational patterns and identity. For the individual family member, this often means sharing life with a changing person in a changing relationship, disrupting both individual identity and family identity. Our aim was to deepen the understanding of individual experiences that are important in constructing family identity close to death at home. We performed a secondary analysis of qualitative data collected through 40 interviews with persons with life-threatening illness and the family members who shared everyday life with them. The analysis resulted in interpretive descriptions which provided three patterns important for creating family identity, which we here call “we-ness” close to death. The patterns were: being an existential person, being an extension of the other, and being together in existential loneliness. Together, these three patterns seemed to play a part in the construction of family identity; we-ness, close to death. One important finding was the tension between the search for togetherness in “we-ness” while dealing with an existential loneliness, which seemed to capture an essential aspect of being a family of which one member is dying.
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| 3. |
- Carlander (Goliath), Ida, 1968-, et al.
(författare)
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Four aspects of self-image close to death at home
- 2011
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : CoAction Publishing. - 1748-2623 .- 1748-2631. ; 6:2
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Tidskriftsartikel (refereegranskat)abstract
- 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 12 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.
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| 4. |
- Carlander (Goliath), Ida, 1968-
(författare)
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Me-ness and we-ness in a modified everyday life close to death at home
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 5. |
- Carlander (Goliath), Ida
(författare)
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Me-ness och We-ness : Individuell och gruppidentitet hos döende personer och deras familjemedlemmar
- 2013
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Ingår i: Socialmedicinsk Tidskrift. - 0037-833X. ; 90:1, s. 165-171
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Tidskriftsartikel (refereegranskat)abstract
- Följande artikel är baserad på en avhandling som beskriver människors upplevelser av sin vardag hemma när en i familjen är svårt sjuk och döende och fokuserar på centrala begrepp som identitet, död och gemenskap. Intervjuer med patienter och deras familjemedlemmar, delvis genomförda över tid, har möjliggjort analyser av berättelser som speglar vardagliga processer, liksom transitioner och rollförändringar. För både patienter och familjemedlemmar medförde vardagen i hemmet en rad fysiska, psykiska och sociala påfrestningar. För familjemedlemmarna innebar det bland annat att dela livet med en förändrad person i en förändrad relation. Vardagen nära döden innebar att möta nya situationer och erfarenheter som utmanade den personliga identiteten; me-ness liksom familjeidentiteten; we-ness.
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| 6. |
- Carlander (Goliath), Ida, 1968-, et al.
(författare)
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The modified self: family caregivers experiences of caring for a dying family member at home
- 2011
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Ingår i: JOURNAL OF CLINICAL NURSING. - : WILEY-BLACKWELL, COMMERCE PLACE, 350 MAIN ST, MALDEN 02148, MA USA. - 0962-1067 .- 1365-2702. ; 20:7-8, s. 1097-1105
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Tidskriftsartikel (refereegranskat)abstract
- 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 of 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 home care 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. This study argues for supporting family caregivers to maximise 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, this study emphasises 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.
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| 7. |
- Hellström, Ingrid, et al.
(författare)
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Närstående i hemsjukvården
- 2010. - 1:1
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Ingår i: Hemsjukvård. - Lund : Studentlitteratur. - 9789144053547 ; , s. 75-90
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 8. |
- Hellström, Ingrid, et al.
(författare)
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Närstående i hemsjukvården
- 2010
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Ingår i: Hemsjukvård. - Lund. - 9789144053547 ; , s. 75-90
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Det är väl känt att närstående gör betydande insatser inom vården och omsorgen. Man anser att de närståendes insatser är tidsmässigt betydligt större än den offentliga insatsen. Den lagstiftning och det samhälle vi lever i är starkt individfokuserat. Det betyder att sjuksköterskor av tradition fokuserar på patienten. En ska är att veta något om den sjukdom som en person drabbas av, men hur olika personer i en familj upplever sjukdomen kan vi få veta genom att fråga dem i ett öppet samtalsklimat. Sjuksköterskan kan genom dialogen stödja närstående i deras sätt att hantera det dagliga livet. Genom detta kan de närstående fortsätta vara experter på sina egna liv, även i en utmanande livssituation tillsammans med en person som behöver vård och omsorg.
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| 9. |
- Henriksson (Alvariza), Anette, et al.
(författare)
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Feelings of Reward among Family Caregivers during Ongoing Palliative Care
- 2014
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; , s. 613-614
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Konferensbidrag (refereegranskat)abstract
- Objectives: Palliative family caregivers appear to experience rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have especially attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. This study aimed to describe feelings of rewards among family caregivers during ongoing palliative care. A further aim was to compare experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and the study took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were used to describe characteristics of the participants and the level of rewards. Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported in general high levels of reward.The largest source of rewards was feelings of being helpful to the patient. This was closely followed by rewards as a consequence of giving something to the patients that brought her/him happiness and being there for the patient. The smallest sources of rewards were personally growth, self-satisfaction and personal meaning. There was an association between rewards and age but not between men and women. Conclusions: Family caregivers experienced rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of rewards seem to be about handling the situation in a satisfying way, to feel competent and confident to take care of the patient and thereby feel proud. Support could preferably be designed aiming to improve family caregiver’s ability to care and to facilitate rewards of caregiving and focus on strengths and resources.
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| 10. |
- Wallin, Viktoria, et al.
(författare)
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Maintaining ordinariness around food : Partners' experienceies of everyday life with a dying person
- 2014
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Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 23:19-20, s. 2748-2756
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives: To explore partners’ experiences of everyday life in caring for a dying person with eating deficiencies at home.Background: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons’ eating deficiencies on their partners, from the perspective of everyday life.Design: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care.Methods: Nine people were purposefully selected and interviewed three–six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method.Results: The partners described experiences of how eating deficiencies brought about changes in the participants’ everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners’ habits were changed.Conclusion:Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being.Relevance to clinical practice: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.
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