“We Don't Have a Back-Up Plan”: An Exploration of Family Contingency Planning for Emergencies Following Stroke

Abstract

Little research has explored emergency preparedness among families coping with stroke. In this longitudinal qualitative study, we explored contingency caregiving planning by interviewing (N = 18) family caregivers providing care for a stroke survivor at home during the first 6 months post-discharge from the hospital. Emergent themes showed most families did not have a concrete “back-up plan” for a crisis or disaster situation involving the primary caregiver being unable to provide care. Furthermore, they assumed formal respite services or long-term care would be available should the need arise. Despite increased awareness over time, most caregivers had not devised contingency plans at 6 months.

Keywords:

• caregiving
• aging
• crisis management
• pandemic
• disaster preparedness
• respite

Acknowledgments

We thank the caregivers for their participation in this study, Dr. Grant Russell and Dr. Hillel Finestone for their involvement as co-investigators of the grant that funded this study, and Ms. Beverley Donovan who assisted with recruitment. Additional thanks to Lynn McCrann, Evelyn Kosteltz, Regine Amani, Taleen Haddad, Jacynthe Bigras, Roy Khalife, and Salwa Akiki for their assistance with transcription of the interview data, and to Dr. Craig Kuziemsky for his comments on an earlier version of this article. This project was funded by The Drummond Foundation, Canada.