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- Alvariza, A., et al.
(author)
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Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home - study protocol for a web-based intervention
- 2020
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In: BMC Palliative Care. - : Springer Science and Business Media LLC. - 1472-684X. ; 19:1
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Journal article (peer-reviewed)abstract
- Background Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. Methods The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. Discussion This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work.
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| 2. |
- Häger Tibell, Louise, et al.
(author)
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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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In: Death Studies. - : Taylor & Francis Group. - 0748-1187 .- 1091-7683. ; 48:4, s. 407-416
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Journal article (peer-reviewed)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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| 3. |
- Häger Tibell, Louise, et al.
(author)
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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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In: Palliative & Supportive Care. - : Cambridge University Press. - 1478-9515 .- 1478-9523.
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Journal article (peer-reviewed)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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| 4. |
- Höst, Gunnar, 1976-, et al.
(author)
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Visual images of the biological microcosmos : Viewers’ perception of realism, preference, and desire to explore
- 2022
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In: Frontiers in Education. - : Frontiers Media SA. - 2504-284X. ; 7
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Journal article (peer-reviewed)abstract
- Visual images are crucial for communicating science in educational contexts and amongst practitioners. Reading images contributes to meaning-making in society at large, and images are fundamental communicative tools in public spaces such as science centers. Here, visitors are exposed to a range of static, dynamic, and digital visual representations accessible through various multimodal and interactive possibilities. Images conveying scientific phenomena differ to what extent they represent real objects, and include photographs, schematic illustrations, and measurement-based models. Depicting realism in biological objects, structures and processes through images differs with respect to, inter alia, shading, color, and surface texture. Although research has shown that aspects of these properties can both potentially benefit and impair interpretation, little is known about their impact on viewers’ visual preference and inclination for further exploration. Therefore the aim of this study is to investigate what effect visual properties have on visitors’ perception of biological images integrated in an interactive science center exhibit. Visitors responded to a questionnaire designed to assess the impact of three indicators of realism (shading, color, and surface texture) and biological content (e.g., cells and viruses) on participants’ preferences, perceptions of whether biological images depicted real objects, and their desire to further explore images. Inspired by discrete choice experiments, image pairs were systematically varied to allow participants to make direct choices between images with different properties. Binary logistic regression analysis revealed that the three indicators of realism were all significant predictors of participants’ assessments that images depict real objects. Shadows emerged as a significant predictor of preference for further exploration together with the presence of cells in the image. Correlation analysis indicated that images that were more often selected as depicting real objects were also more often selected for further exploration. We interpret the results in terms of construal level theory in that a biological image perceived as a realistic portrayal would induce a desire for further exploration. The findings have implications for considering the role of realism and preference in the design of images for communicating science in public spaces.
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