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Recognition and reassurance through web-based support for family caregivers during specialised palliative home care
Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.ORCID iD: 0000-0003-4315-7676
Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.ORCID iD: 0000-0001-6019-4335
Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet University, Stockholm; Karolinska Institute, Stockholm.ORCID iD: 0000-0002-8780-5922
University of Melbourne, Melbourne, Australia; Vrije University, Brussels, Belgium.
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2024 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

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.

Place, publisher, year, edition, pages
2024.
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-10846DOI: 10.1177/02692163241242338OAI: oai:DiVA.org:esh-10846DiVA, id: diva2:1863642
Conference
13th World Research Congress of the EAPC (European Association for Palliative Care), Barcelona, Spain, May 16-18, 2024.
Part of project
Promoting preparedness for family caregiving in a specialised palliative home care context - a randomized controlled web-based intervention trial, Swedish Research CouncilAvailable from: 2024-05-31 Created: 2024-05-31 Last updated: 2024-06-04Bibliographically approved

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Bauman, CeciliaWallin, ViktoriaDoveson, SandraKreicbergs, UlrikaAlvariza, Anette

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