Family caregivers navigating the health care system: Evolving roles during the COVID-19 pandemic. 2022

Wagahta Semere, and Lena K Makaroun, and Scott Beach, and Dean Schillinger, and Ann-Marie Rosland
Department of Medicine, University of California San Francisco.

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. 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. 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). 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. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

UI MeSH Term Description Entries
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D002908 Chronic Disease Diseases which have one or more of the following characteristics: they are permanent, leave residual disability, are caused by nonreversible pathological alteration, require special training of the patient for rehabilitation, or may be expected to require a long period of supervision, observation, or care (Dictionary of Health Services Management, 2d ed). For epidemiological studies chronic disease often includes HEART DISEASES; STROKE; CANCER; and diabetes (DIABETES MELLITUS, TYPE 2). Chronic Condition,Chronic Illness,Chronically Ill,Chronic Conditions,Chronic Diseases,Chronic Illnesses,Condition, Chronic,Disease, Chronic,Illness, Chronic
D003695 Delivery of Health Care The concept concerned with all aspects of providing and distributing health services to a patient population. Delivery of Dental Care,Health Care,Health Care Delivery,Health Care Systems,Community-Based Distribution,Contraceptive Distribution,Delivery of Healthcare,Dental Care Delivery,Distribution, Non-Clinical,Distribution, Nonclinical,Distributional Activities,Healthcare,Healthcare Delivery,Healthcare Systems,Non-Clinical Distribution,Nonclinical Distribution,Activities, Distributional,Activity, Distributional,Care, Health,Community Based Distribution,Community-Based Distributions,Contraceptive Distributions,Deliveries, Healthcare,Delivery, Dental Care,Delivery, Health Care,Delivery, Healthcare,Distribution, Community-Based,Distribution, Contraceptive,Distribution, Non Clinical,Distributional Activity,Distributions, Community-Based,Distributions, Contraceptive,Distributions, Non-Clinical,Distributions, Nonclinical,Health Care System,Healthcare Deliveries,Healthcare System,Non Clinical Distribution,Non-Clinical Distributions,Nonclinical Distributions,System, Health Care,System, Healthcare,Systems, Health Care,Systems, Healthcare
D005260 Female Females
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000086382 COVID-19 A viral disorder generally characterized by high FEVER; COUGH; DYSPNEA; CHILLS; PERSISTENT TREMOR; MUSCLE PAIN; HEADACHE; SORE THROAT; a new loss of taste and/or smell (see AGEUSIA and ANOSMIA) and other symptoms of a VIRAL PNEUMONIA. In severe cases, a myriad of coagulopathy associated symptoms often correlating with COVID-19 severity is seen (e.g., BLOOD COAGULATION; THROMBOSIS; ACUTE RESPIRATORY DISTRESS SYNDROME; SEIZURES; HEART ATTACK; STROKE; multiple CEREBRAL INFARCTIONS; KIDNEY FAILURE; catastrophic ANTIPHOSPHOLIPID ANTIBODY SYNDROME and/or DISSEMINATED INTRAVASCULAR COAGULATION). In younger patients, rare inflammatory syndromes are sometimes associated with COVID-19 (e.g., atypical KAWASAKI SYNDROME; TOXIC SHOCK SYNDROME; pediatric multisystem inflammatory disease; and CYTOKINE STORM SYNDROME). A coronavirus, SARS-CoV-2, in the genus BETACORONAVIRUS is the causative agent. 2019 Novel Coronavirus Disease,2019 Novel Coronavirus Infection,2019-nCoV Disease,2019-nCoV Infection,COVID-19 Pandemic,COVID-19 Pandemics,COVID-19 Virus Disease,COVID-19 Virus Infection,Coronavirus Disease 2019,Coronavirus Disease-19,SARS Coronavirus 2 Infection,SARS-CoV-2 Infection,Severe Acute Respiratory Syndrome Coronavirus 2 Infection,COVID19,2019 nCoV Disease,2019 nCoV Infection,2019-nCoV Diseases,2019-nCoV Infections,COVID 19,COVID 19 Pandemic,COVID 19 Virus Disease,COVID 19 Virus Infection,COVID-19 Virus Diseases,COVID-19 Virus Infections,Coronavirus Disease 19,Disease 2019, Coronavirus,Disease, 2019-nCoV,Disease, COVID-19 Virus,Infection, 2019-nCoV,Infection, COVID-19 Virus,Infection, SARS-CoV-2,Pandemic, COVID-19,SARS CoV 2 Infection,SARS-CoV-2 Infections,Virus Disease, COVID-19,Virus Infection, COVID-19
D017028 Caregivers Persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients. Family Caregivers,Informal Caregivers,Spouse Caregivers,Care Givers,Carers,Care Giver,Caregiver,Caregiver, Family,Caregiver, Informal,Caregiver, Spouse,Caregivers, Family,Caregivers, Informal,Caregivers, Spouse,Carer,Family Caregiver,Informal Caregiver,Spouse Caregiver
D058873 Pandemics Epidemics of infectious disease that have spread to many countries, often more than one continent, and usually affecting a large number of people. Pandemic

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