Cumulative Disempowerment: How Families Experience Older Adults’ Transitions into Long-Term Residential Care

ABSTRACT

Although emerging research links family experiences with long-term residential care (LTRC) transitions to structural features of health care systems, existing scholarship inadvertently tends to represent the transition as an individual problem to which families need to adjust. This secondary qualitative analysis of 55 interviews with 22 family members caring for an older adult engages a critical gerontological lens. A concept of cumulative, structural empowerment informs this analysis of families’ experiences across a broad continuum of older adults’ moves into LTRC. Leading up to transitions, families have little power over home care services, and family members have little control over their involvement in care provision. Some families respond by making choices to refuse publicly provided service options, therein both resisting and reinforcing broader relations of power. Expectations for family involvement in LTRC placement decisions were incongruent with some families’ experiences, reinforcing a sense of powerlessness compounded by the speed with which these decisions needed to be made. A broad temporal analysis of transitions highlights LTRC transitions as a process of cumulative family disempowerment connected to broader formal care structures alongside emphases on aging in place and familialism that characterize LTRC as the option of last resort.

KEYWORDS:

• Long-Term residential care
• care transitions
• family caregiving
• older adults

Acknowledgements

The authors appreciate the time and insights provided by all participants, interview assistance from Sheila Novek and Lisette Dansereau, and transcription assistance from Ms. Catherine Davey. Funding for the primary study was received from Research Manitoba.

Disclosure statement

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

Notes

¹ There is growing emphasis in policy and practice on utilizing all non-facility options before admission can be approved, as well as stricter eligibility criteria for facilities (Canadian Healthcare Association, 2009;; Chateau et al., 2012). However, as Marier (2021) notes, rhetorical emphasis on aging in place has not typically been matched by proportionate funding for home care.

² In most Canadian regions, public home care services are described to families as not guaranteed; families must have a back-up plan if a worker cannot make a scheduled appointment (Auditor General of Manitoba, 2015).

³ Supportive housing provides 24-hour support and supervision within a group congregate setting for frail and/or cognitively impaired individuals. Personal care is provided within supportive housing, either by a tenant companion or, if care needs are assessed as great enough, through the regular home care program.

⁴ A policy that dictates individuals be transferred to LTRC once a medical professional has deemed them stable enough to transfer; if an individual or family member declines the “first available bed” offer from the system they are faced with a daily service charge to remain in hospital until a different offer is accepted.

⁵ Hospitalized patients will start paying per diem rates (the personal cost individuals must normally pay to reside in a LTRC) back to the hospital as of the date the panel decision is made, while they are waiting for LTRC placement. As the length of time between panel date and placement offer is unpredictable, clients waiting in hospital are then paying for the same amount of care they were previously receiving at no personal cost (prior to the paneling process).:

⁶ These data were collected prior to the Covid-19 pandemic. In Canada, access to long-term residential care facilities by family caregivers was severely restricted or prohibited for extended lengths of time due to concerns about contagion. Here again, caregivers collectively experienced significant disempowerment, this time around their ability to provide any care or support to residents.

Additional information

Funding

The work was supported by the Manitoba Health Research Council [].