| 1. |
- Alvariza, Anette, et al.
(författare)
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Palliative care nurses' strategies when working in private homes : A photo-elicitation study
- 2020
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 29:1-2, s. 139-151
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: To explore palliative care nurses' work experiences caring for patients at the end of life in private homes.BACKGROUND: The home continues to be a desired place for care and dying; however, professional competence is needed and specialist palliative care nurses play a crucial role, often highly valued by patients and their family members. The private home as a physical work environment for nurses is explored, with both positive and negative aspects being described. To ensure future high-quality end-of-life care, there is a need to describe how palliative care nurses work in private homes.DESIGN: Interpretative descriptive.METHODS: Participant-generated photographs were used in conjunction with follow-up interviews with ten palliative home care nurses. Interpretive description was used for analysis. This study follows the COREQ checklist.RESULTS: The analysis process resulted in four constructed themes, presented here as strategies used by palliative care nurses: adjusting interactions and actions depending on the environment when entering each unique private home; supporting patients and family members in finding a balance between self-care, independence and safe care; guiding patients and family members towards and through environmental changes supporting end-of-life care at home; and using transitions between homes to reflect, recuperate and prepare.CONCLUSION: Working as a palliative care nurse in private homes clearly requires a variety of skills and competences, here operationalised in different strategies used to promote high-quality care.RELEVANCE TO CLINICAL PRACTICE: Palliative care nurses' considerations, insights and competence when performing end-of-life care in the diverse environments of private homes can contribute to the development of clinical practice. Knowledge about strategies can be used in nursing practice during everyday work, in nursing education and in the organisation of care, and can inform policy to ensure future high-quality palliative home care.
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| 2. |
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| 3. |
- Alvariza, Anette, et al.
(författare)
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Viktigt att stärka närståendes möjligheter att förbereda sig
- 2016
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Ingår i: Läkartidningen. - : Swedish Medical Association. - 0023-7205 .- 1652-7518. ; 113:47, s. 1-3
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- När svårt sjuka patienter vårdas i det egna hemmet har närstående ofta en avgörande roll.De närstående har också, utöver vårdsituationen, att hantera sina egna känslor kring förlust, sorg och död.Närstående är ofta otillräckligt förberedda för sin vårdarroll och har behov av information och stöd.Att vara förberedd har lyfts fram som ett viktigt fenomen för närstående. Det har visat sig relatera till flera positiva faktorer och anses ha en skyddande effekt mot negativa konsekvenser.Med en öppen, ärlig kommunikation och ett riktat stöd ökar närståendes möjligheter att förbereda sig för en vårdande roll samt det faktum att sjukdomen är obotlig och leder till döden.
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| 4. |
- Bergstrand, Renée, et al.
(författare)
-
AKADEMISKT SÄBO
- 2023
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- I den här sessionen presenterar vi akademisk SÄBO ur olika perspektiv. Vi kommer att berätta om: (x) samskapande, utveckling och uppbyggnad av akademisk SÄBO(x) att vara kommundoktorand och vägen dit. Vi kommer även att berätta om (x) att vara forskare på SÄBO och om (x) samverkan mellan forskning, utveckling och utbildning. I sessionen knyter vi an till palliativ vård genom våra olika exempel. Bland annat kommer vi att beskriva SÄBO som arena för utveckling, följeforskning och deltagarbaserad forskning.samt SÄBO som arena för strukturerade förbättringsarbeten och ett doktorandprojekt om förberedande samtal om livet och döden på SÄBO tillsammans med personal och chefer på SÄBO i Stockholm
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| 5. |
- 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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| 6. |
- 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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| 7. |
- 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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| 8. |
- 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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| 9. |
- 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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| 10. |
- 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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| 11. |
- Carlander (Goliath), Ida, et al.
(författare)
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Värdighet och döende
- 2009
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Rapport (övrigt vetenskapligt/konstnärligt)
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| 12. |
- Cleeve, Helena, et al.
(författare)
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Not just things : the roles of objects at the end of life
- 2018
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Ingår i: Sociology of Health and Illness. - : John Wiley & Sons. - 0141-9889 .- 1467-9566. ; 40:4, s. 735-749
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Tidskriftsartikel (refereegranskat)abstract
- While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.
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| 13. |
- Ewertzon, Mats, et al.
(författare)
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Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care
- 2018
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Ingår i: Journal of Advanced Nursing. - : Wiley-Blackwell. - 0309-2402 .- 1365-2648. ; 74:8, s. 1839-1850
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Tidskriftsartikel (refereegranskat)abstract
- AimTo adapt the Family Involvement and Alienation Questionnaire (FIAQ) for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability. BackgroundInvolvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed. DesignA psychometric evaluation study, with a cross-sectional design. MethodThe content validity of the FIAQ was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used. ResultsThe content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the FIAQ (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability. ConclusionThe study provides evidence that the FIAQ (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care.
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| 14. |
- Gedda, Jenny, et al.
(författare)
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We Are Co : Ett digitalt verktyg som stimulerar och inspirerar medmänniskor till en förbättradgemensam upplevelse i palliativ vård
- 2022
-
Konferensbidrag (refereegranskat)abstract
- Trots insikten om den sociala delens betydelse för en holistisk vård saknas idag personcentrerade lösningar på hur vi kan möta upp och stödja den döendes och de närståendes sociala situation i palliativ vård.Syftet med projektet är att utforma en app för den som är nära livets slut och hens närstående. Målet är ett digitalt verktyg som ska bidra till att inspirera och engagera människor att belysa livet, den unika individen och skapa upplevelser av gemenskap, vardag, hopp och delaktighet nära livets slut. Genom att utgå från det sociala mötet och fokusera på att bidra med konkret inspiration för att stimulera till aktiviteter, samtal och möten.En innovationsprocess används där patienter med behov för palliativ vård, närstående, experter från vården och forskare deltar för att skapa förutsättningar för en användarcentrerad och holistisk digital tjänst. Insikter och koncept utformas i workshops med närståendegrupp (12 personer som förlorat närstående) samt intervjuer med slutanvändare och workshops med expertgruppen (10 experter med erfarenhet av palliativvård). Genom att involvera användare löpande i utvecklingen samskapas en lättanvänd, skalbar, jämlik och användarvänlig tjänst med hög grad av personifiering.Resultat från workshops och intervjuer är positiva och bekräftar ett behov av ett verktyg med fokus på det sociala mellanmänskliga mötet. Användartester av första prototypen bidrog till en mer innovativ användning av bild och video och utökad fokus på imaginär inspiration som grundas på sinnen och livsämnen.Projektet har potential att addera förutsättningar att underlätta och inspirera personer nära livets slut och närståendes möten under vårdperioden med fokus på sociala upplevelser. En förbättrad social upplevelse kan minska stress för personen och närstående, möjliggöra för personalen att fokusera på de andra viktiga områdena av vården samt skapa bättre förutsättningar för kommunikation mellan personer nära livets slut, närstående och personalen.
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| 15. |
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| 16. |
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| 17. |
- Goliath, Ida, et al.
(författare)
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Närstående i hemsjukvården
- 2017. - 2
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Ingår i: Hemsjukkvård. - Lund : Studentlitteratur AB. - 9789144115856 ; , s. 171-186
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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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| 18. |
- Hajradinovic, Yvonne, et al.
(författare)
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Family members' experiences of the end-of-life care environments in acute care settings : A photo-elicitation study
- 2018
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 13:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
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| 19. |
- 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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| 20. |
- 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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| 21. |
- Henoch, Ingela, 1956, et al.
(författare)
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Palliative Care Research : A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012
- 2016
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell. - 0283-9318 .- 1471-6712. ; 30:1, s. 5-25
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Forskningsöversikt (refereegranskat)abstract
- Background: In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci.Methods: A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'.Results: A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age.Conclusions: The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes.
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| 22. |
- Henriksson (Alvariza), Anette, et al.
(författare)
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Factors associated with feelings of reward during ongoing family palliative caregiving
- 2015
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523. ; 13:3, s. 505-12
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers.METHOD: Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards.RESULTS: The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving.SIGNIFICANCE OF RESULTS: It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.
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| 23. |
- 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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| 24. |
- Henriksson (Alvariza), Anette, et al.
(författare)
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Feelings of rewards among family caregivers during ongoing palliative care
- 2015
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Ingår i: Palliative & Supportive Care. - : CAMBRIDGE UNIV PRESS. - 1478-9515 .- 1478-9523. ; 13:6, s. 1509-1517
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have 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. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and 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 employed to describe characteristics of the participants and the level of rewards. A Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women. Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.
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| 25. |
- Holm, Maja, et al.
(författare)
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Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers
- 2015
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Ingår i: Bmc Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 14
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
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| 26. |
- Holm, Maja, et al.
(författare)
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Leading an intervention for family caregivers : a part of nursing in palliative care
- 2017
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Ingår i: International Journal of Palliative Nursing. - : Mark Allen Group. - 1357-6321 .- 2052-286X. ; 23:4, s. 166-172
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Tidskriftsartikel (refereegranskat)abstract
- Professional leadership has been highlighted as an important part of successful intervention delivery. The aim of this study is to explore the narratives of nurses involved in leading a group intervention for family caregivers in palliative care. Nurses were interviewed about their experiences as group leaders in a psycho-educational group intervention, which was delivered at 10 specialised palliative home care settings, with the help of an intervention manual. Data were analysed with interpretive descriptive methodology. Three themes were identified in the analysis: embracing the leading role, developing qualities as a group leader, and professional and personal development. The results showed that the role as group leader initially was a challenge for the nurses, but that they gradually were able to develop the professional and personal skills that were required. The nurses believed that their profession was best suited to lead this kind of supportive intervention.
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| 27. |
- Holm, Maja, et al.
(författare)
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Preparing for family caregiving in specialized palliative home care : an ongoing process
- 2015
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:3, s. 767-775
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Tidskriftsartikel (refereegranskat)abstract
- Objective: Family caregivers have been given increasing importance in palliative home care and face a great responsibility as caregivers for patients suffering from incurable illness. Preparedness for caregiving has been found to moderate negative effects and promote well-being in family caregivers. The aim of our study was to explore family caregivers' own experiences of preparing for caregiving in specialized palliative home care.Method: An interpretive descriptive design was chosen. A strategic sampling method was applied with a focus on participants who rated their preparedness as high and low using a structured instrument. Qualitative interviews were completed with 12 family caregivers. They were analyzed using a constant-comparative technique.Results: Family caregivers described their experience of preparing for caregiving as an ongoing process, rather than something done in advance. The process was illustrated through three subprocesses: "awaring" (realizing the seriousness of the situation), "adjusting" (managing a challenging situation), and "anticipating" (planning for the inevitable loss).Significance of results: Knowledge about the process of preparedness for caregiving and its subprocesses could be valuable to healthcare professionals, given the positive effects shown by preparedness in this context. Being able to recognize the different subprocesses of preparedness for caregiving could provide healthcare professionals with opportunities to support family caregivers in managing them. Preparedness for caregiving should be seen as a process to be supported and promoted continuously in palliative home care, not just at enrollment.
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| 28. |
- Holm, Maja, et al.
(författare)
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Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals
- 2017
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Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 6-11
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care. Methods: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles. Results: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support. Conclusions: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT. (C) 2017 Elsevier Ltd. All rights reserved.
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| 29. |
- Johansson, Therese, et al.
(författare)
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Validation of a culturally adapted Swedish-language version of the Death Literacy Index
- 2023
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Ingår i: PLoS ONE. - 1932-6203. ; 18:11 November
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Tidskriftsartikel (refereegranskat)abstract
- The death literacy index (DLI) was developed in Australia to measure death literacy, a set of experience-based knowledge needed to understand and act on end-of-life (EOL) care options but has not yet been validated outside its original context. The aim of this study was to develop a culturally adapted Swedish-language version of the DLI, the DLI-S, and assess sources of evidence for its validity in a Swedish context. The study involved a multi-step process of translation and cultural adaptation and two validation phases: examining first content and response process validity through expert review (n = 10) and cognitive interviews (n = 10); and second, internal structure validity of DLI-S data collected from an online cross-sectional survey (n = 503). The psychometric evaluation involved analysis of descriptive statistics on item and scale-level, internal consistency and test-retest reliability, and confirmatory factor analysis. During translation and adaptation, changes were made to adjust items to the Swedish context. Additional adjustments were made following findings from the expert review and cognitive interviews. The content validity index exceeded recommended thresholds (S-CVIAve = 0.926). The psychometric evaluation provided support for DLI-S’ validity. The hypothesized six-factor model showed good fit (χ2 = 1107.631 p<0.001, CFI = 0.993, TLI = 0.993, RMSEA = 0.064, SRMR = 0.054). High internal consistency reliability was demonstrated for the overall scale (Cronbach’s α = 0.94) and each sub-scale (α 0.81–0.92). Test-retest reliability was acceptable, ICC ranging between 0.66–0.85. Through a comprehensive assessment of several sources of evidence, we show that the DLI-S demonstrates satisfactory validity and acceptability to measure death literacy in the Swedish context. There are, however, indications that the sub-scales measuring community capacity perform worse in comparison to other sca and may function differently in Sweden than in the original context. The DLI-S has potential to contribute to research on community-based EOL interventions.
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| 30. |
- Kjellgren, Helena, et al.
(författare)
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Exploring Objects at the End of Life
- 2016
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier. - 0885-3924 .- 1873-6513. ; 52:6, s. E37-E37
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: While there has been an increasing recognition that the physical setting matters in end-of-life (EoL) care, objects (e.g. beds, socks, hearing aids) are notably overlooked and it is unknown how they add meaning to care settings, particularly beyond usability and functionality. In our study, we set out to explore the EoL setting from the perspective of family members. Through a preliminary analysis we noted that objects were mentioned throughout the narratives and therefore we focused our analysis on exploring the roles of objects. Methods: We interviewed 25 family members, recruited from residential care facilities, as well as palliative in-patient and homecare units, who had witnessed the dying and death of someone close to them. The interviews were prompted by open inquiries about EoL experiences, rather than specific questions about settings. The narratives were transcribed verbatim and analyzed using thematic analysis. Results: Objects were conceptualized as having interconnected roles relating to temporality, the everyday, and care. Many talked about rearranging objects to mark beginnings and ends in moments of transitions and thus rendering temporality tangible. Simultaneously, objects had roles in transforming everyday life and were assigned new meanings through the contexts they were part of. Objects were also interpreted as signs of care, where lack of sensitivity towards surrounding objects was associated with poor care. Conclusions: Our results indicate that objects are dynamic, in that interaction with objects and the meaning of these interactions change throughout the dying process. This contrasts with other studies, which have tended to approach the EoL settings as discrete with predefined properties, reinforcing instrumental and unidirectional understandings of relationships between people and settings. Our study expands on knowledge of objects in EoL processes and we argue the potential of this knowledge as a means to enhance supportive EoL settings.
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| 31. |
- Momeni, Pardis, et al.
(författare)
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A survey study of family members' encounters with healthcare services within the care of older people, psychiatric care, palliative care and diabetes care
- 2022
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 36:4, s. 1228-1240
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to describe and compare family members' experiences of approach in encounters with healthcare professionals and possible feelings of alienation in the professional care within four care contexts: the care of older people, psychiatric care, palliative care and diabetes care. The design was an explorative cross-sectional survey study. Data were collected in Sweden using the Family Involvement and Alienation Questionnaire-Revised (FIAQ-R). It measures family members' experiences of the healthcare professionals' approach and the family members' feeling of alienation from the provision of professional care. A total of 1047 questionnaires were distributed to family members using convenient sampling method, of which 294 were included. Data were analysed using rank-based, non-parametric statistical methods. The results indicated that most respondents experienced a positive actual approach from the healthcare professionals. Many participants rated the importance of approach at a higher level than their actual experience. Participants in the context of diabetes care reported a more negative actual approach from the healthcare professionals than did participants in the other contexts and considered the healthcare professionals' approach towards them as being less important. The results for the entire group indicated that the participants felt a low level of alienation from the professional care. Participants in the context of the care of older people reported significantly lower level of feeling of being alienated than did participants in the contexts of psychiatric care and diabetes care. The differences between participants in diabetes care and other care contexts can possibly be explained by a more fully implemented self-care approach among the patients in diabetes care than in the other care contexts. Even though the results are quite positive, it is still important that nurses consider a family-centred approach to better adapt to the needs of both the family members and the patients.
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| 32. |
- Norinder, Maria, et al.
(författare)
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Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.
- 2017
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 15:3, s. 305-312
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.METHOD: Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.RESULTS: Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.SIGNIFICANCE OF RESULTS: Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.
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| 33. |
- Stranz, Anneli, 1971-, et al.
(författare)
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The call-bell in residential care homes : Experiences of residents and staff
- 2022
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Ingår i: Journal of Aging Studies. - : Elsevier BV. - 0890-4065 .- 1879-193X. ; 62
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Tidskriftsartikel (refereegranskat)abstract
- Background/objectives: Call-bells are often taken-for-granted systems to heighten safety. In joint discussions among residential care home (RCH) residents, their family members, and staff, issues related to call-bell use in everyday life and work were repeatedly raised. In this article, we explore these experience-based perspectives, addressing several key questions important for call-bell use and communication.Research design/methods: We inductively analyzed a series of individual interviews and group discussions with 44 individuals at two units of the same Swedish RCH, conducted as part of a participatory action research project to strengthen supportive end-of-life environments.Results: While the call-bell was a central part of RCH communication, we found: fragmented understanding about how the call bell functioned among all participants; many residents lacked the physical and cognitive competencies demanded for call-bell use; tensions between use of the call-bell for social/existential communication versus purely discrete tasks; and that a call-bell system assuming room-bound residents exacerbated issues related to varied response times, lack of feedback mechanisms, and pressured work situations.Discussion and implications: Investigation of the call-bell system provides an empirical example of how complex relationships among stakeholders are played out in concrete situations. Tensions between different logics of care, and between clock and embodied time become evident.
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| 34. |
- Tishelman, Carol, et al.
(författare)
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Beyond the visual and verbal : Using participant-produced photographs in research on the surroundings for care at the end-of-life
- 2016
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Ingår i: Social Science and Medicine. - : Elsevier BV. - 0277-9536 .- 1873-5347. ; 168, s. 120-129
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Tidskriftsartikel (refereegranskat)abstract
- The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: “what is this picture of?” and “why is it meaningful to you?” The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with one's daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using one's body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with one's past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in one's surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development.
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| 35. |
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| 36. |
- 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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| 37. |
- Wallin, Viktoria, et al.
(författare)
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Meanings of eating deficiencies for people admitted to palliative home care
- 2015
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Ingår i: Palliative & Supportive Care. - 1478-9515 .- 1478-9523. ; 13:05, s. 1231-1239
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Tidskriftsartikel (refereegranskat)abstract
- Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.
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| 38. |
- Årestedt, Kristofer, et al.
(författare)
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Factors Associated with Feelings of Reward during Ongoing Palliative Family Caregiving
- 2014
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; , s. 699-699
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Konferensbidrag (refereegranskat)abstract
- Objectives: Of the few studies that have paid attention to feelings of reward in palliative family caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward in family palliative caregivers. Methods: The study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire including the Rewards of Caregiving Scale (RCS). The questionnaire also included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards. Results: The results showed that more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship to the patient felt less rewarded by caregiving. Significance of results: It seems reasonable that feeling rewarded can significant to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and co-varying factors such as preparedness, anxiety, hope, and being in a spousal relationship with the patient influence the experience.
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| 39. |
- Årestedt, Kristofer, 1968-, et al.
(författare)
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Symptom relief and palliative care during the last week of life among patients with heart failure : a national register study
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 21:3, s. 361-367
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.DESIGN: This is a national register study.SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
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