From Compliance to Care: Qualitative Findings from a Survey of Essential Caregivers in Ontario Long-Term Care Homes.

Abstract

The COVID-19 pandemic highlighted the importance of the care provided by family members and close friends to older people living in long-term care (LTC) homes. Our implementation science team helped three Ontario LTC homes to implement an intervention to allow family members to enter the homes during pandemic lockdowns. We used a variety of methods to support the implementation, and this paper reports results from an Ontario-wide survey intended to help us understand the nature of the care provided by family caregivers. We administered a survey of essential caregivers in Ontario, and a single open-ended question yielded a substantial qualitative data set that we analysed with a coding and theming procedure that yielded 13 themes. The 13 themes reveal deficiencies in Ontario's LTC sector, attempts to cope with the deficiencies, and efforts to influence change and improvement. Our findings indicate that essential caregivers find it necessary to take on vital roles in order to shore up two significant gaps in the current system: they provide psychosocial and emotional (and sometimes even basic) care to residents, and they play a monitoring and advocacy role to compensate for the failings of the current regulatory compliance regime.