Increased preparation for family members of patients with an incurable illness

Increasing life expectancy and improved medical treatments are societal developments in Sweden, which mean that more people are living with illness for a long time. The number of hospital places is decreasing and more patients with an incurable life-threatening illness are being cared for in their own homes, with enormous input from family members. Without support, family members are themselves at risk of becoming the patients of the future, which entails economic and social costs not only for the individual but also for society. This pilot study investigates whether web-based support can be a way to provide scientifically-based support to family members.

The feeling of being prepared can have a positive effect on family members, both before and after the patient’s death. Supportive interventions that have been offered by multi-professional care teams have been shown to increase the sense of preparation for illness and death. A higher degree of preparation has, for example, been linked to lower levels of anxiety, depression, perceived burden and stress, as well as greater well-being. It is very important to find effective ways to offer support to everyone who needs it, to increase preparation and thus reduce the negative consequences related to the care and loss of a loved one.

On the website narstå there is a supportive intervention in the form of films showing conversations between family members (actors) and healthcare staff (authentic) as well as informative texts. The website also has a chat forum that provides the opportunity for contact with other family members. The overall aim of the project is to evaluate whether the use of the website is helpful for family members’ with regard to their preparation for providing care, for the patient’s imminent death and for their own continued life. The project also examines possible connections between family members’ preparation and their health one year after the patient’s death. Family members of patients who are cared for by specialised home care teams (ASIH) in Stockholm County will be recruited to the study with the help of the healthcare staff.

A web-based support intervention for family members of patients with an incurable illness can, in a resource-efficient way, reach out with evidence-based support. While the project is ongoing, the website will only be open to those who are part of the project. After the project is completed, information about the website’s content can be disseminated via social media and directly by mail and flyers to relevant healthcare units. This support intervention for family members of patients with an incurable life-threatening illness will then be available throughout Sweden and thereby could benefit many people.

This research project is expected to contribute important knowledge about support via a web-based intervention. Higher levels of preparation can be expected to reduce negative consequences and promote the physical and psychosocial health of family members in both the short and long term. The project will contribute with general knowledge about the development, implementation and importance of support for family members.

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About the project:

Project group/collaborators:
  • Ulrika Kreicbergs, Gunnar Steineck, Maja Holm, Tomas Lindroth, and Anna Sigridur Islind
Time period: 2019-2022
Research area: Palliative Research Centre
Project status: Ongoing

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Last updated:
4 January 2022