Family Caregivers Navigating the Health Care System: Evolving Roles During the COVID-19 Pandemic

• Published in: Families systems & health 2022-06, Vol.40 (2), p.268-273
• Main Authors: Semere, Wagahta, Makaroun, Lena K., Beach, Scott, Schillinger, Dean, Rosland, Ann-Marie
• Format: Article
• Language: English
• Subjects: Caregivers; Caregiving; Chronic Disease; Chronic diseases; Chronic Illness; Chronic illnesses; Company business management; COVID-19; COVID-19 - epidemiology; Delivery of Health Care; Families & family life; Family Members; Female; Health care services accessibility; Health planning; Human; Humans; Male; Methods; Middle Aged; Pandemics; Practice; Prevention; Primary care; Responsibility; Risk factors; Roles; Telemedicine
• ISSN: 1091-7527; 1939-0602
• DOI: 10.1037/fsh0000688

Introduction: The COVID-19 pandemic has altered access to health care; it remains unclear how patients with chronic illness and disability and their family caregivers are adapting to these changes. In this study, we examined changes in family caregiver roles helping care recipients with chronic illness and disability navigate health care needs during the COVID-19 pandemic. Methods: From April 15 to May 27, 2020, we distributed online and telephone surveys to family caregiver members of a population-based regional research registry. Caregivers reported whether they were helping "more," "less," or the "same" with ten health care activities (e.g., filling prescriptions, attending medical appointments) now, compared to before the coronavirus pandemic. Using multivariable logistic regression models, we examined caregiver and caregiving context characteristics associated with helping more with 1 or more health care activities. Results: Of 561 caregiver respondents, mean age was 59 years, 76% were women, and 56% co-resided with care recipients. Many caregivers (59%) reported increased help with 1 or more health care activities since the pandemic. Caregivers reported greater help getting medical supplies (31%) and attending care recipients' phone (21%) and video (16%) medical appointments. Women (OR 1.55; 95% CI 1.02-2.36) and caregivers assisting with short-term physical conditions were more likely to help more with 1 or more health care activities (OR 2.81; 95% CI 1.20-6.59). Discussion: Family caregivers reported their responsibilities helping care recipients with chronic conditions and disabilities stay engaged with health care increased since the pandemic. Providers and health systems should consider targeted strategies to support caregivers helping vulnerable patients access necessary care. Public Significance Statement This study suggests that during the COVID-19 pandemic, many family caregivers have provided greater assistance with health care activities to patients with chronic illness and disability. These findings highlight the need to identify patients' involved caregivers and ensure that they have the information and resources needed to assist patients adapting to changes in health care access.