“Standing alone”: understanding the self-management of family caregivers of persons post-stroke at the time of acute care

Abstract

Purpose

To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation.

Methods and Materials

We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis.

Results

The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data.

Conclusion

During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.

Implications for Rehabilitation

• Family caregivers’ development of self-management starts in acute care and needs more guidance from health professionals.

• All health professionals should take a proactive, partnership attitude towards family caregivers to better support them in developing self-management skills

• Different forms of self- management, such as co-management with family and friends, need to be considered when developing self-management programs for family caregivers.

• During acute care, family caregivers benefit from repeated information. Besides verbal information health professionals should consider different methods for providing information, including written, visual or audiotaped methods.

• Health professionals should raise awareness among family caregivers about the topics of role changes and the importance of a balance of activities. They should provide information about these topics to promote the caregivers’ health and well-being.

Keywords:

• family caregivers
• stroke
• self-management
• co-management acute care

Acknowledgments

We thank all the family caregivers of post-stroke persons who were willing to share their experiences. We based this article on the first author’s master’s thesis, therefore we also thank colleagues and examiners for reviewing the paper.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.