Technology Supported Education of Informal Caregivers of Individuals Living With Stroke

In the initial phase of our project, we found that individuals who have experienced a stroke generally feel well supported by the technologies currently available for home use. They did not express specific needs for new technologies. Instead, they emphasized the lack of an overview of the many existing options and expressed a desire for decision-making aids to help them choose the most suitable technologies.

Therapists also expressed satisfaction with the technologies available for home use by stroke patients. However, they identified two key needs: first, greater clarity regarding the reimbursement of such technologies, and second, paid time to stay up to date on new developments. They stressed that they can only recommend and teach the use of these technologies to their clients if they themselves have sufficient time to familiarize themselves with them—a task that is often carried out in their personal time, as there is currently no reimbursement for this effort.

The group with the greatest unmet needs was the informal caregivers—individuals who support stroke survivors in their daily lives without payment and often without formal training. They are typically (spouses) partners, children, parents, other relatives, or friends. Their responsibilities range from caregiving tasks (e.g., personal hygiene, medication administration, wound care if needed) to organizational tasks (e.g., transportation to medical appointments or therapy sessions) and everyday chores (e.g., shopping or managing finances).

This group expressed a strong need for training in various areas, as they often felt left alone and inadequately informed. Many also reported being pressed for time, making it essential to have learning resources that are accessible anytime and anywhere.

The original study funded by external grants has now been completed. Based on the results from this first project phase, we started several follow-up projects together with master’s students at ZHAW.

Valeria Mäusli carried out a nationwide survey in Switzerland to explore and deepen what we learned from the interviews. She summarized her findings in her master’s thesis, “Informal Caregivers in Focus: Addressing Educational Needs and Technological Solutions to Support Stroke Caregivers in Switzerland,” which she successfully completed in June 2025.

These results were an important basis for developing a Massive Open Online Course (MOOC)—a free online learning course that is open to everyone. The course is designed for family members and other informal caregivers who support someone after a stroke. It helps close knowledge gaps, explains key information in clear language, and offers practical tips for everyday life.

The MOOC is published and available on OpenLearnity (German only):
www.openlearnity.org/courses/Unterstutzung/

We are currently working on the next phase of the project. Sonja Willmann is testing how easy the course is to use and how well it works in real life as part of her master’s thesis. In a pilot study, Isabelle Vetterli is investigating whether taking the MOOC can reduce the burden on family caregivers.

For anyone interested in how informal caregivers can be further empowered, we also recommend the work of our colleagues in the SCOHPICA project.

Stroke is one of the leading causes worldwide of long-term limitations in daily activities and participation in everyday life. Occupational therapists play a pivotal role in supporting individuals after a stroke to regain independence and reintegrate into their daily routines, enhancing their quality of life.

A significant number of stroke survivors express a strong desire to return to their familiar home environment. This transition often depends on the support of family members or other informal caregivers. For this reason, it is crucial to involve these caregivers actively in the occupational therapy process and address their needs as well.

Technology holds great potential for outpatient stroke rehabilitation, particularly for home-based use. However, there is limited knowledge about which technologies are perceived as most beneficial by stroke survivors, their caregivers, and therapists, as well as about the specific needs of these groups.

Study Objectives

This study aims to explore the perspectives and needs of three key groups:

• Stroke survivors living in private households,
• Informal caregivers who support them in their daily lives,
• And occupational therapists involved in their rehabilitation.

The focus is on the use of technologies for home-based rehabilitation during the recovery process in Switzerland. Using qualitative research methods, we aim to identify the specific requirements and expectations of these groups, helping to optimize the use of technologies and improve the sustainability of stroke rehabilitation.

In addition to the individuals listed below in the project team, the following ZHAW students also participated in the project:

• Sonja Willmann
• Valeria Mäusli
• Isabelle Vetterli