| 1. |
- Bauman, Cecilia, et al.
(författare)
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Mutuality and understanding through web-based support during specialised palliative home care : Family caregivers’ and patients’ experiences
- 2024
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Konferensbidrag (refereegranskat)abstract
- Background/Aim Family caregivers and patients in palliative care are often mutually dependent, supporting each other through the impact of serious illness. The possibility to cope as a couple is of particular importance for family caregivers when providing care at home. A psycho-educational website was developed to support family caregivers in this situation. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers, for example illness-related communication and planning for the future. This study aimed to explore influences of web-based support on experiences of mutual support between family caregivers and patients with life-threatening illness.Methods This study was part of a randomised controlled trial and used a qualitative approach. In total, 8 couples were interviewed, one family caregiver and one patient together in each interview (age 46–85). Data were analysed using interpretive description.Results Both family caregivers and patients appreciated the opportunity for family caregivers to have their own private platform of support. For each of them personally, and as a couple, it was relieving that also family caregivers’ needs gained attention and were put into focus. Family caregivers expressed feelings of normalisation as their own thoughts were addressed in the videos. Recognising the situations described in the videos was empowering, helping to cope with their own stress and strain, as well as facing the patient’s similar feelings. This facilitated their everyday life as a couple supporting each other in illness. Couples described themselves as being a team.Conclusions This website, supporting family caregivers, influenced family caregivers’ and patients’ mutual life by enhancing understanding of the shared situation and how to approach it. Although only family caregivers did access the website, it was beneficial for both of them in their everyday life.
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| 2. |
- Bauman, Cecilia, et al.
(författare)
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Recognition and reassurance through web-based support for family caregivers during specialised palliative home care
- 2024
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Konferensbidrag (refereegranskat)abstract
- Background/Aims Even though in person supportive group interventions for family caregivers have been effective they can also be challenging to implement. Web-based support could be an alternative and hence we developed a website focused on a psycho-education for family caregivers. In short videos healthcare professionals and family caregivers (actors) interact, discussing issues known to be of importance for family caregivers. Informative texts and a moderated chat forum are also included. This study aimed to explore family caregivers’ experiences of the website while caring for a patient with life-threatening illness at home.Methods The present study was a part of a randomised controlled trial and used a qualitative approach. Interviews were performed with 16 family caregivers (age 42–85); 12 partners, 2 adult children, 1 parent, and 1 sibling. Data were analysed using qualitative content analysis.Results Family caregivers appreciated the flexibility and possibility to access the website at a time and place of their own convenience when ready to do so. Having access to the website was perceived as reassuring because caregivers knew they could access support when needed throughout the illness progression. Using the website made it easier to approach and reflect upon issues related to incurable illness and death, it also facilitated addressing such issues with the patient. The videos contributed to a sense of recognition and comfort when the family caregivers’ own thoughts, concerns, and feelings were described by others. This was important to gain new insights on difficulties and challenges in their role as caregivers. Family caregivers hesitated to use the chat forum even though they wanted to. They expressed waiting for others to initiate a conversation.Conclusions Psycho-education content via a website allowed family caregivers to decide what support they wanted depending on needs, time, and situation. Future research should focus on evaluating effects of web-based support through experimental designs.
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| 3. |
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| 4. |
- Drachmann, Fie F., et al.
(författare)
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Sire breed has a larger impact on sensory and technological meat quality than dam breed in beef-on-dairy heifers reared on forage and semi-natural grasslands
- 2024
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Ingår i: Livestock Science. - : Elsevier. - 1871-1413. ; 282
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Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to evaluate the meat quality of beef-on-dairy heifers from Holstein or Swedish Red-and-White dams sired by Angus or Charolais bulls reared on forage and semi-natural grasslands. Production systems with moderately high and low feeding intensities were compared, where animals grazed for one or two summers and were slaughtered at 20 or 27 months of age, respectively. Meat quality of crossbred heifers from Holstein and Swedish Red-and-White dams was comparable in M. longissimus lumborum (LL) and differed in pH, yellowness and Warner-Bratzler shear force (WBSF) in M. semimembranosus (SM) with Swedish Red-and-White being less tough. Compared with LL from Charolais crossbreeds, LL from Angus was redder and had lower WBSF, higher intramuscular fat concentration (IMF%), a more pronounced metallic flavour and a more pronounced umami taste. Meat quality of SM did not differ between Angus and Charolais crossbreeds. Generally, the production system with moderately high feeding intensity resulted in less tough beef that was lighter and less red and had higher IMF%. Consequently, beef from Charolais crossbreeds reared at a low feeding intensity exhibited the poorest meat quality with the lowest IMF% in LL (2.80 and 3.77 % for Holstein and Swedish Red-and-White, respectively). Nevertheless, crossbreeds did not differ in sensory meat quality. Generally, meat quality of beef-on-dairy heifers reared on forage and semi-natural grasslands was high, and while Angus crossbreeds delivered high-quality beef from both feeding intensities, Charolais crossbreeds are better suited for the moderately high feeding intensity, when aiming for high meat quality.
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| 5. |
- Gabrielsson, Hanna, 1977-, et al.
(författare)
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Övergången från att vara patient med cancer till person med erfarenhet av cancer : Civilsamhällets roll i rehabilitering
- 2023
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Ingår i: Socialmedicinsk Tidskrift. - : Socialmedicinsk tidskrift. - 0037-833X. ; 100:1, s. 165-178
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Forskningsöversikt (refereegranskat)abstract
- En avslutad cancerbehandling innebär inte automatiskt ett avslut på de utmaningar som följer med cancer. Behovet av cancerrehabilitering ökar i takt med fler som överlever cancer. Det råder viss otydlighet kring vilka rehabiliteringsinsatser som efterfrågas och vilka aktörer som erbjuder dessa. Denna studie har genom en litteraturöversikt satt ljuset på deltagares erfarenheter av cancerrehabilitering samt civilsamhällets roll i rehabilitering efter genomgången cancer i de nordiska länderna. Resultatet av litteraturöversikten visar att få studier finns publicerade om civilsamhällets roll i cancerrehabilitering. Personer som har genomgått en cancersjukdom har ofta behov av stöd under sin rehabilitering, där stöd från personer i liknande situation uppskattas av många. Resultatet visar även att organisationer i civilsamhället spelar en betydande roll. Studien har genomförts vid Centrum för civilsamhällesforskning, Marie Cederschiöld Högskola.
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| 6. |
- Haghighi, Mona, et al.
(författare)
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A Comparison of Rule-based Analysis with Regression Methods in Understanding the Risk Factors for Study Withdrawal in a Pediatric Study
- 2016
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Ingår i: Scientific Reports. - : Springer Science and Business Media LLC. - 2045-2322. ; 6
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Tidskriftsartikel (refereegranskat)abstract
- Regression models are extensively used in many epidemiological studies to understand the linkage between specific outcomes of interest and their risk factors. However, regression models in general examine the average effects of the risk factors and ignore subgroups with different risk profiles. As a result, interventions are often geared towards the average member of the population, without consideration of the special health needs of different subgroups within the population. This paper demonstrates the value of using rule-based analysis methods that can identify subgroups with heterogeneous risk profiles in a population without imposing assumptions on the subgroups or method. The rules define the risk pattern of subsets of individuals by not only considering the interactions between the risk factors but also their ranges. We compared the rule-based analysis results with the results from a logistic regression model in The Environmental Determinants of Diabetes in the Young (TEDDY) study. Both methods detected a similar suite of risk factors, but the rule-based analysis was superior at detecting multiple interactions between the risk factors that characterize the subgroups. A further investigation of the particular characteristics of each subgroup may detect the special health needs of the subgroup and lead to tailored interventions.
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| 7. |
- Hjorth, Elin, et al.
(författare)
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Patientorganisationer som företräder riskgrupper under covid-19-pandemin : förändringar i organisation och relation till andra aktörer
- 2021
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Ingår i: Socialmedicinsk Tidskrift. - : Socialmedicinsk tidskrift. - 0037-833X. ; 98:1, s. 38-47
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Tidskriftsartikel (refereegranskat)abstract
- Under covid-19-pandemin, skedde stora förändringar i svenska samhället, förändringar som även påverkade de patientorganisationer som företräder personer med extra utsatt risk vid smitta. Patientorganisationer har en roll i utformningen av svensk sjukvårdspolitik, utöver att även fungera som en servicefunktion för sina medlemmar. Det har dock diskuterats vilken förmåga patientorganisationerna har att anpassa sig efter förändringar i samhället. Den akuta inledande fasen av covid-19-pandemin har studerats i denna studie och hur pandemin påverkat patientorganisationers relation till medlemmar, andra aktörer och stat. Ledande representanter för fem patientorganisationer som företräder personer i riskgrupp för covid-19 intervjuades. Studien visar att patientorganisationer var snabba med att göra omstruktureringar i organisationen för att möta nya akuta behov. Bland annat skapades nya aktiviteter för medlemmar, stadgar ändrades och samarbetskanaler med andra organisationer intensifierades för politisk påverkan.
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| 8. |
- Häger Tibell, Louise, et al.
(författare)
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Preparedness for caregiving and preparedness for death : Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care
- 2024
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Ingår i: Death Studies. - : Taylor & Francis Group. - 0748-1187 .- 1091-7683. ; 48:4, s. 407-416
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing.
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| 9. |
- Häger Tibell, Louise, et al.
(författare)
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Web-based support for spouses of patients with life-threatening illness cared for in specialized home care : A feasibility study
- 2022
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Ingår i: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523.
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.METHODS: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.RESULTS: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.SIGNIFICANCE OF RESULTS: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.
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| 10. |
- Högberg, Cecilia, et al.
(författare)
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Närståendes erfarenheter av webbaserat stöd under pågående specialiserad hemsjukvård : ’Närstående.se’
- 2023
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Konferensbidrag (refereegranskat)abstract
- Bakgrund Stöd till närstående är en grundläggande del av palliativ vård. Stödinterventioner som erbjudits i grupp in-real-life har utvärderats med positiva effekter. Det kan dock vara svårt för närstående att delta på grund av svårigheter att lämna den sjuke och formatet passar heller inte alla. Webbaserade lösningar kan möjliggöra för fler att ta del av stöd utifrån egna förutsättningar och behov. Olika alternativ finns men mer kunskap om webbaserat stöd behövs.Syfte Att undersöka närståendes erfarenheter av stöd i samband med deltagande i en webbaserad intervention ’Närstående.se’ under pågående specialiserad hemsjukvård.Metod Webbsidan ’Närstående.se’ är baserad på tidigare forskning och innehåller kortare filmer där vårdpersonal (autentisk) samtalar med närstående (skådespelare) om ämnen som ofta är angelägna för närstående. Filmerna kompletteras med fördjupande texter och på webbsidan finns ett modererat chattforum. Studien ingår i ett projekt med randomiserad kontrollerad design. Kvalitativa intervjuer genomfördes med 7 närstående varav 5 partners, 1 syskon och 1 dotter, mellan 46–80 år. Data analyserades med kvalitativ innehållsanalys.Resultat Möjligheten att vid behov och i lugn och ro ta del av stöd hemifrån uppskattades. Närstående uttryckte att det genom ’Närstående.se’ kunde vara lättare att närma sig frågor om svår sjukdom och död. Användning av webbsidan gav närstående igenkänning, bekräftelse och normaliserande av svåra känslor. Att ta del av webbsidan bidrog till att svåra ämnen hamnade i fokus vilket kunde underlätta samtal inom familjen. Webbsidan hade använts i olika omfattning men vetskapen om att ha tillgång till den upplevdes som en trygghet.Konklusion Närstående upplever att webbaserat stöd finns när de behöver det. Att närstående kan välja att ta del av specifikt stöd vid behov innebär att stödet blir personcentrerat och anpassat för deras behov.
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