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- 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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- 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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- 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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- 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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- 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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- 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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- 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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- 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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