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

• Published in: Journal of gerontological social work 2023-04, Vol.66 (3), p.433-455
• Main Authors: Scott, Erin L., Funk, Laura M.
• Format: Article
• Language: English
• Subjects: Aged; Aging; Alienation; care transitions; Empowerment; Family; family caregiving; Family power; Health care; Health services; Home Care Services; Home health care; Humans; Independent Living; Long term; Long-Term Care; Long-Term residential care; Medical decision making; older adults; Older people; Parent participation; Power; Qualitative research; Relatives; Residential care; Residential institutions
• ISSN: 0163-4372; 1540-4048
• DOI: 10.1080/01634372.2022.2113489

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.