Background: Person-centered and family-centered care represents the pinnacle of health care quality, but delivering it is challenging, as is assessing whether it has occurred. Prior studies portray older adults as passive in health decisions and burdened by care-but emphasize age-based differences or focus on vulnerable subgroups.
Objectives: We aimed to examine domains of person-centered and family-centered care among older adults and whether the social context in which older adults manage their health relates to preferences for participating in health decisions and experiences with care.
Design and participants: This was an observational study of a nationally representative survey of adults aged 65+ years, conducted in concert with the 2012 National Health and Aging Trends Study (n = 2040).
Main measures: Approach to managing health (self-manage, co-manage, delegate); preferences for making health care decisions with: (1) doctors, (2) family/close friends; and experiences with care pertaining to treatment burden were measured.
Key results: Approximately two-thirds of older adults self-manage (69.4 %) and one-third co-manage (19.6 %) or delegate (11.0 %) health care activities. The majority prefer an independent or shared role when making health decisions with doctors (84.7 %) and family/close friends (95.9 %). Nearly four in ten older adults (37.9 %) experience treatment burden-that managing health care activities are sometimes or often hard for either them or their family/close friends, that health care activities get delayed or don't get done, or that they are cumulatively too much to do. Relative to older adults who self-manage, those who delegate health care activities are more likely to prefer to share or leave health decisions to doctors (aOR = 1.79 (95 % CI, 1.37-2.33) and family/close friends (aOR = 3.12 (95 % CI, 2.23-4.36), and are more likely to experience treatment burden (aOR = 2.37 (95 % CI, 1.61-3.47).
Conclusions: Attaining person-centered and family-centered care will require strategies that respect diverse decision-making preferences, minimize treatment burden, and support the broader social context in which older adults manage their health.
Keywords: decision-making; older adults; patient-centered care; self-management; treatment burden.