Stroke family caregivers’ support needs change across the care continuum: a qualitative study using the timing it right framework

Abstract

Purpose: Family caregivers provide essential support as stroke survivors’ return to community living, but it is not standard clinical practice to prepare or provide ongoing support for their care-giving role. In addition, health care professionals (HCPs) experiences with providing support to caregivers have not been explored previously. The objectives of this qualitative study were to: (1) explore the support needs over time from the perspective of caregivers, (2) explore the support needs over time from the perspective of HCPs, and (3) compare and contrast caregivers’ and HCPs’ perspectives. Methods: A qualitative study with stroke family caregivers (n = 24) and HCPs (n = 14). In-depth interviews were audio taped, transcribed, and analyzed using Framework Analysis. Results: Three main themes emerged concerning: (1) types and intensity of support needed; (2) who provides support and the method of providing support; and (3) primary focus of care. These themes are discussed in relation to the TIR framework. Conclusions: Caregivers’ needs for support and the individuals most suited to providing support change across the stroke survivor’s recovery trajectory. Changes to service delivery to better support caregivers may include: (1) addressing caregivers’ changing needs across the care continuum; (2) implementing a family-centered model of care; and (3) providing 7-day per week inpatient rehabilitation.

Implications for Rehabilitation

• Caregivers support needs change across the care continuum

• Support programs should be offered outside usual working hours

• Health care professionals should address the needs of the stroke survivor and their family caregiver

• Caregivers benefit from receiving support from health care professionals, family, friends, and care-giving peers

Keywords::

• Caregiver
• stroke
• social support
• education
• health service delivery

Acknowledgements

We thank the caregivers and health care professionals who took the time to participate in this research.

Declaration of Interest: This research was supported by a Ministry of Health and Long-term Care Career Scientist Award (JIC) and a research grant from CIHR Strategic Training Initiative in Health Care Technology and Place. It was partly supported by the University of Toronto Mary Trimmer Chair in Geriatric Medicine (GN).