Needs of informal caregivers of patients after stroke: a qualitative study

Background

Although informal caregivers play a central role in supporting patients after stroke, their experiences and needs are often insufficiently considered in the organization of post-stroke care.

Objectives

To explore the experiences and needs of informal caregivers of post-stroke patients.

Methods

A qualitative study was conducted from November 2025 to March 2026 using semi-structured interviews (n = 20). Participants included five patient–informal caregiver dyads and 10 non-dyadic participants: five post-stroke patients and five informal caregivers. Data collection continued until thematic saturation was achieved. Interviews were transcribed verbatim, de-identified, and analyzed using Braun and Clarke’s six-phase thematic analysis approach (2006).

Results

Among informal caregivers, most were women (n = 8), and two were men (n = 2); participants ranged in age from 28 to 70 years. Interviews showed that, after discharge, care largely shifted to the family, requiring continuous involvement and self-directed learning of practical care skills. Participants reported physical, emotional, and financial strain that affected employment, personal time, and social participation. The main challenges were insufficient preparation for home-based care, lack of clear post-discharge guidance, and limited support from health and social services. Key needs included practical caregiver training, clear discharge guidance, psychological support, respite opportunities, and social assistance.

Conclusions

The findings indicate that informal caregivers remain insufficiently prepared and supported after a patient’s discharge, which may increase caregiver exhaustion and affect the recovery process. Integrating practical caregiver training and psychological support into post-stroke care is essential to strengthen both family caregiving capacity and patient recovery.

Key messages

• Informal caregivers are central to recovery after stroke, but they are often insufficiently prepared and supported for the demands of caregiving.

• Limited practical training and support increase the hidden burden of caregiving, underscoring the need to integrate informal caregivers into post-stroke care pathways.