‘It’s not just the word care, it’s the meaning of the word…(they) actually care': caregivers’ perceptions of home-based primary care in Toronto, Ontario

Abstract

The frail and homebound older adult populations currently experience difficulties accessing primary care in the medical office. Given this fundamental access to care problem, and the questionable care quality that arises when navigating a labyrinthine health-care system, these populations have typically been subject to inadequate primary care. To meet their needs better, growing research stresses the importance of providing comprehensive home-based primary care (HBPC), delivered by an inter-professional team of health-care providers. Family care-givers typically provide the majority of care within the home, yet their perceptions of HBPC remain under-researched. The purpose of this study was to explore unpaid care-givers' perceptions of and experiences with HBPC programmes in Toronto, Canada. We conducted qualitative inductive content analysis, using analytic procedures informed by grounded theory, to discover a number of themes regarding unpaid care-givers' understandings of HBPC. Findings suggest that, compared to the standard office-based care model, HBPC may better support unpaid care-givers, providing them assistance with system navigation and offering them the peace of mind that they are not alone, but have someone to call should the need arise. The implications of this research suggest that HBPC could be a model to help mitigate the discontinuities in care that patients with comorbid chronic conditions and their attendant unpaid care-givers experience when accessing fragmented health, home and social care systems.

Health-care Workforce Training to Effectively Support Family Caregivers of Seniors in Care

“…Such awareness can heighten HCP empathy toward FCGs, and foster compassionate interactions between HCPs and FCGs. (38) Care outcomes can improve when both patients and FCGs are engaged in care delivery. (35,39,40) Person-centred care recognizes that FCGs and care recipients are experts in their unique situations, and that working together with professionals can lead to better outcomes.…”

“…(12,20,40) Finding, negotiating for and maintaining services, (50) as well as navigating the complexities of health and community systems, can be onerous and intimidating. (38,47) While HCP support with navigation can reduce FCG stress, it is important to consider that some FCGs prefer exploring resources and making decisions for themselves. (40,50) Training HCPs in system navigation and determination of FCG needs in this regard can better position HCPs to determine and provide the appropriate level of FCG support.…”

Developing person‐centred care competencies for the healthcare workforce to support family caregivers: Caregiver centred care

“…FCG research has been dominated by a focus on educating FCGs to manage the care-recipient's illness, personal care, behaviours; and increasingly medical care tasks formerly done by health professionals (Badovinac et al, 2019;HQO, 2016;Lilly, Robinson, Holtzman, & Bottorff, 2012;Smith-Carrier et al, 2018). FCGs need evidence-based education and supports (Ackerman & Sheaffer, 2018;Bangerter, Griffin, Zarit, & Havyer, 2019;Burch, Dugan, & Barnes-Farrell, 2019;Schulz et al, 2020;Shepherd-Banigan et al, 2018;Sherifali et al, 2018).…”

Understanding the educational and support needs of informal care-givers of people with dementia attending an outpatient geriatric assessment clinic

“…adult children, siblings, etc. ), friends and faith communities (Farran et al , 2003; Donnellan et al , 2015; Smith-Carrier et al , 2017). These sources of support can mitigate burden and improve the care individuals provide (Zarit et al , 1999; Farran et al , 2003; Winslow, 2003; Donnellan et al , 2015).…”