Birgitta Johansson's projects in caring sciences in oncology

Internet-based support (Carer eSupport) for informal caregivers of patients with head and neck cancer – a multicentre randomized controlled trial

Birgitta Johansson

Informal care is unpaid and provided by a dependent person’s partner, another family member or a friend, i.e. informal caregivers. Informal caregivers to people who undergoes treatment for head- and neck cancer commonly have to take a on a great responsibility for the homebased care, which they may not be prepared for. Informal caregivers have great unmet needs for support from healthcare professionals and are at risk for a decreasing health which may persist for several years.

The overall aim the project is to develop, test and evaluate the effect of internet-based support (Carer eSupport) for informal caregivers (IC s) to patients head and neck cancer (HNC) on preparedness for caregiving, caregiver burden and self-perceived health, compared to standard care, within a randomized controlled trial. The project is conducted in close collaboration between researchers within, medicine, cancer nursing and human-computer interaction and started 2020.

In the first study, ICs were interviewed regarding their experiences of caring for someone with head and neck cancer, and their opinions about how an internet-based support may be designed with regard to content and user interface. We have used the results from that study to develop the first version of the internet-based support (Carer eSupport).

During 2023 we will test this version of Carer eSupport in a group of ICs. The knowledge from the test will be used to refine and improve Carer eSupport with regard to the content and the user interface. When Carer eSupport may be deemed to be optimal we will evaluate the effects of the support on ICs preparedness for care, perceived care burden and health.

The project is supported by grants from the Swedish Research Council 2020-2022 and the Swedish Cancer Society 2021-2023. The project is a multidisciplinary collaboration with researchers from IGP, Dept. of Surgical Sciences, Dept of Information Technology and Dept. of Women's and Children's Health.

Internet-based screening and stepped care for adult cancer patients with anxiety or depression symptoms

Birgitta Johansson, Peter Nygren

The research programme U-CARE is an interdisciplinary project in the field of psychosocial care in connection with somatic disease. We were heading the subproject within adult oncology care, which aims to evaluate the effects of internet based stepped care (iCAN-DO) on anxiety, depression and health related quality of life in cancer patients compared to standard care.

iCAN-DO decreased the levels of symptoms of depression and the proportion of individuals with symptoms of depression at 10 months, compared with conventional care. There were no significant effects on anxiety or HRQoL. Patients who had used iCAN-DO found it safe and reliable and used it as a complement to standard care, according to an interview study. An evaluation of the effects of iCAN-DO at 24 months is ongoing.