Experiences of patients with stroke and their caregivers with caregiver-mediated exercises during the CARE4STROKE trial

Abstract

Purpose: Caregiver-mediated exercises are a novel way of delivering augmented exercise therapy for patients with stroke, in which patients do additional therapeutic exercises together with a caregiver. This explorative qualitative study is part of the CARE4STROKE trial and focused on how participants manage these exercises together. The research questions were: (1) how do the patient–caregiver couples exercise together? and (2) what does exercising together bring about, besides more hours of practice?

Methods: Semi-structured interviews were conducted with patients and caregivers who participated in the CARE4STROKE intervention. Inductive thematic data analysis was applied.

Results: Seven patients and seven caregivers were interviewed. Three different role-dynamics were found during caregiver-mediated exercises: (1) patient in control, (2) in concert, and (3) the caregiver as informal carer. In addition, three themes were identified about what exercising together brings about: (a) tailor-made exercises through active involvement, (b) preparation for the home situation, and (c) opportunity to be involved.

Conclusion: Different role-dynamics are at play in caregiver-mediated exercises, and it is important for participating staff to be aware of their possible effects on the strain of patient or caregiver. Caregiver-mediated exercises were found to enhance individualization of the treatment plan and preparation for home discharge.

Implications for rehabilitation

• Caregiver-mediated exercises, in which a caregiver does exercises with a patient, are currently under investigation as a new form of augmented exercise delivery after stroke

• Doing exercises together seems to make patient and caregivers actively involved in rehabilitation, which they appreciate, and which seems to help them prepare for the home situation

• Caregiver selection and monitoring role-dynamics during exercising is an important task of the rehabilitation team

Keywords:

• Stroke
• caregivers
• exercise therapy
• telemedicine

Acknowledgments

We thank the patients that participated in this trial and the physiotherapists and other staff involved.

Disclosure statement

The authors report no conflicts of interest.

Additional information

Funding

This study is funded by the Netherlands Organization of Health Research and Development (ZonMW), grant number 837001408.