Promoting preparedness for family caregiving in a specialised palliative home care context - a randomized controlled web-based intervention trial

Sweden has a societal development characterized by increasing life expectancy and improved medical treatments, which results in more people living for longer periods with illness. The number of hospital beds is decreasing, and more patients with incurable life-threatening diseases are being cared for at home, where family caregivers make significant contributions. Without support, family caregivers risk becoming future patients themselves, which can lead to economic and social challenges, not only for the individual but also for society.

In this research project consisting of two parts—a feasibility study and a randomized controlled study—it is examined whether web-based support can be a complement to the support that healthcare can offer to family caregivers.

The feeling of being prepared can have a positive impact on Family caregivers, both before and after the patient’s death. Supportive interventions provided by multi-professional care teams have been shown to increase feelings of preparedness for the period of illness and for death. A higher degree of preparedness has been linked to less anxiety, depression, perceived burden and stress, as well as increased well-being. It is essential to find effective ways to offer support to those in need to increase preparedness and thereby reduce the negative consequences associated with caregiving and the loss of a close person.

On the website narstaende.se, there is a psycho-educational intervention in the form of videos featuring conversations between family caregivers (actors) and healthcare professionals (authentic), as well as informative texts. The overall aim of the project is to evaluate whether the use of the website has an impact on family caregivers' preparedness for caregiving, for the patient's impending death, and for their future life. Further, it is examined whether family caregivers' need for support can be met via the website. The project also investigates potential associations between family caregivers' preparedness and their health six months to a year after the patient's death. Participants in the study are family caregivers of patients receiving care at specialized home healthcare units (ASIH) in the Stockholm County.

A web-based psycho-educational intervention for family caregivers of patients receiving care in specialized home healthcare can, in a resource-efficient way, provide evidence-based support. The website narstående.se has earlier been accessible only to those participating in the study. Data management and analysis are still in progress, but the website is now public available and open for anyone to visit.

The research project is expected to contribute important knowledge about support via a web-based intervention. A higher degree of preparedness is expected to reduce negative consequences and promote physical and psychosocial health for Family caregivers in the short and long term. The project will contribute to general knowledge about the development, implementation, and significance of support for Family caregivers.

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About the project:

Time period: 2019-2026
Research area: Department of Health Care Sciences – Palliative Research
Project status: Ongoing

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Last updated:
20 November 2024